Reception auties 2018/19 - thread 2

[openupmyeagereyes]

Thanks to LightTripper for the thread title. This is the continuation of the thread for parents and carers of dc with autism in their reception year at school. Please join us if you can or, if you have dc due to start reception in 2019, feel free to drop by and ask us questions.

Thread 1

danni I would be crying too after that, you poor thing. You are such a strong person but it’s only natural to have a wobble now and again. I can believe how strong he is, ds is very strong too.

Firstly, are ds and the 1:1 ok after the head butting? I hope so.

I don’t really have words of wisdom either I’m afraid. Has a specialist teacher been into the school to advise them? If not it may be an idea, though as you say, not all strategies work for every child. Ours keep pushing visuals despite the fact that ds is very verbal and pays no attention to them! They think that they will be of help when he’s upset/having a meltdown but I’m yet to see it myself.

When you say the only specialist school ‘that could take him’ do you mean there are others that can’t for some reason or is that the only option? Are there any primaries with ASD units or anything similar? It might be worth calling your local SENDIASS team to see whether there are any other options.

I’m the meantime, vent here as much as you want

I agree with the others. The school is not currently meeting his needs, and as someone said on another thread, they are currently misappropriating his funds by only having him 2 hours a day.

Danni I'm so sorry this morning has been so hard. I have cried in the school office after a difficult drop off with my older ds after the headteacher had to peel him off me and carry him to his classroom kicking and screaming.

Thanks for the advice about toilet training. He is dry at school, I don't know why he can't do it at home. He's been really hyper this evening and managed to bump his head without me noticing until bedtime which I feel so guilty about. He wet himself again too, although he managed to be dry all day on Sunday. I found out today that ds's paediatrician has left and it's going to be quite a wait to see someone else. He is in the middle of his autism assessment and I'm worried the new Dr will want to start the whole thing again.

Hi, thanks for all the replies  ds has been asleep since 7.15pm so I've tidied up, had a coffee in peace and have a few spare minutes now.

I picked ds up this morning he had continued the behaviour, kicking with his piedro boots on so they had to temporarily remove his shoes to stop him (his boots weigh a ton and hurt when he kicks with them on) he was then removed from the classroom for throwing toys and taken to the sensory room to read stories and his 1-1 tried to give him a shoulder massage to calm him, she put shoes back on and he didn't kick again but he continued throwing so she had to walk him up and down the corridor showing him things to distract him.

They are doing there best, but I don't think they've had a dc like ds before. He has ok days there were they get all the learning jobs done and she says he's had a good day and then there's days like today, I think today was as far has he's gone up to now, but the defiant behaviour is more frequent recently so he's having more bad days at school unfortunately.

I suggested autism outreach support to come in, but if I'm honest it's the same people from the cdc and it's one strategy fits all so not sure how useful that will be. As we have had there input before at nursery and it was useless. But I have at least suggested that to see what they can take from it.

Ds 1-1 is extremely understanding and doesn't seemed phased by it to be honest, she's trying to work it out like me, she's writing a daily report up each day and going through it to identify anything, I apologised for this morning & she was fine. Ds head is ok thanks @openupmyeagereyes he was head butting her with the top of his head sort of repeatedly throwing his head back and ramming his head into her if you get me. he was doing it for a reaction as he was laughing but it was like sensory seeking behaviour actually now I've got 10 mins to think properly, he gets really rough and enjoys it. He is on the waiting list for private sensory integration therapy they said it will be April time they see him he's been on the list since September but might ring tomorrow and see if they could get us in any earlier.

We will be having a meeting with school shortly and will try to address everything and speak about EHCP etc.

Regarding the 2.5 hours at school, he has been on those hours since September, they said they would keep him on that till Xmas then increase hours after Xmas gradually but the increase hasn't happened. I've requested several times, but I have a feeling the difficult behaviour recently has put a halt on that? They say it's because the senco is off sick and need to sort with her first. But either way ds needs an education so needs sorting quick he's only currently at school 12.5 hours a week.

I also need to take ds to drs which I will book tomorrow, he has never pooh'd normally sorry tmi! Hes always loose (limited diet and eats quite a bit of fruit) so because of his limited diet I put him on spatone iron for a few months and it made him constipated so eventually stopped with that but he's back to being loose but he sometimes says tummy ache and farts a lot and the odd time he's constipated again which we give lactolose for when he's constipated (we did see gp in November regarding this who gave lactolose for when constipated) so think I will take him back again, as he can't tell me when he's in pain he will just randomly say tummy ache every so often but he sometimes says tummy ache when he has a visible cold ie runny nose etc so it's confusing as I think he feels not well but gets muddled up as he's not sure so says tummy when he possibly means under the wether from a cold, so think a trip back to dr is in order and see if he can examine him to see if he is constipated or whatever. clutching at straws but could be worsening behaviour if he's suffering with tummy.

Need to also ring continence team regarding toileting (still in nappies) but suppose at the minute that's least of my worries.

This afternoon we had pretty much the same sort of behaviour at home, but last night he only slept for 7 hours and he was really tantruming today everything being a big deal so I think or in fact I know he was tired so that's played a big part. He also gets like that when hungry. Another thing to sort is melatonin! next paediatric appointment is a few weeks away so can do it then.

We had the private SALT this afternoon, first appointment for an assessment which I was dreading given this mornings antics. I nearly made her put full body armour on before she entered

She's came by recommendation, I spoke with her twice and exchanged emails and she seemed really knowledgeable. She travels an hour and half to us.

She thinks his range of vocab is really wide as in the words he can say and his sentence structure is fine as he can put words into a sentence, she showed him a toy elephant and asked him what it was and he just replied 'elephant' but then she showed him an aeroplane and he answered 'that's an aeroplane' so when it's following his interests you get more from him, so she said unless whoever it is that's assessing him is aware of that then they will hear him say 'elephant' and just mark him down as low when if in fact they showed him something of his interest he would say more and be marked up higher.

She also said his speech had a few immaturities but nothing concerning for his age.

But his problems are the use of language and it being functional. His concrete understanding was better but his abstract was very delayed.

She couldn't give me an age he's at right now as she said he's very spikey and she would like to see him a couple more times before she gives us a more accurate answer.

She's confident he will be able to have a conversation at some point in the future & he needs manually teaching this in small manageable steps as it's not coming naturally as it does with NT children. She doesn't think he's got a language disorder, his language is just typical of asd and is also delayed.

She said she has lots of things in mind and would really like to work with him and she seemed to think she could help. She said we were doing everything we could to help and to carry on the bits we do. She's sending us a detailed report out so that will be interesting to read.

Sorry that was long.

Just writing my thoughts down as you do.

I'm sorry Danni that sounds rough.

It's funny but although DD is coping well when she gets very excited she does tend to run into me with her head. It can hurt and I try to get her to stop but it takes her quite a while and like your DS she is just giggling while she does it - like she's really hyper. I wonder if it's a kind of stim to bash their head into stuff (and throw things around): maybe if he had something else to stim with (a punchbag? Big bean bag to throw himself into?) that might give him a different outlet he can use? Sounds like it might be a positive/excited overwhelm rather than a negative one?

Glad the SLT seems good - I think a spiky profile is incredibly common for ASC and it's great when somebody recognises that. Hopefully the school can also engage him more and stretch him longer by playing to his interests?

Just a quick post. This was the closest thing I could find to head butting in my understand your child’s sensory signals book.

Just a quick post from me too.

Thanks for that @LightTripper

& @openupmyeagereyes I have the out of synch child, but not the one you just put pic up of, I have few different books which are useful, I've just ordered that one you said and it's being delivered via amazon on Thursday

Have been onto banardos today regarding the sensory integration therapy & we are still 6 months down the list she is having a word and seeing what she can do after I explained about all the sensory seeking.

That looks like a really useful book open, thanks for posting that!

Definitely worth chasing up the OT danni, I really do think OT has been the most important thing for my ds.

liv how often do you see the OT?

He was going once a week for an hour. We just changed that to 1.5hours every two weeks so that they can do more active things so that he is relaxed enough to work on his fine motor skills.

We’ve just restarted an hour once a fortnight, she goes into school. Our OT only works term time and we had a longer break while he settled into school. I suppose the key thing is to work on things in between. School tries to do lots of gross and fine motor skills stuff any way but at home I find it harder as he’s so unwilling. I need to find better ways of encouraging him. Any ideas?

Liv and open what sort of things do your OT do? Do you mind me asking how much it costs? X

danni I think ours is £75 per hour, same as SALT. It’s not cheap. I meant to list the things she gave us to do at home, I’ll try and do it later.

This week at school she had him crawling through a Lycra tunnel (she left this at school for them to use). She also does tug of war with this. Fine motor - pulling coins out of play doh and putting in a money box. Tweezer work and encouraging scissors. He is using scissors that you squeeze at the moment.

Do you have 'the out of sync child has fun' open? There's lots of good ideas in there. I suppose it depends what you need to focus on in particular. To be honest I'm pretty rubbish at encouraging him to do things at home. I usually leave things out where he can see them and let him choose what he needs.

Danni ours is more expensive, we're in London though. The price varies depending on if you block book or not. They do a mixture of swinging, crashing, climbing, assault course type activities and then intersperse sitting down games like puzzles, board games, drawing, theraputty etc

danni ours breaks up tabletop activities with movement activities too.

liv yes, it’s one of the many books I have. I’ll take a look at it

Sorry, what I meant by that was that I have loads of books but I’m not bloody using them!

Liv and open sorry me again do you both pay for this yourself? Not EHCP funded for OT and SALT or anything?

Our salt is £75 for 45 mins but she's being v crafty. She's charging me £18 for travel which was for the round trip worked out by mileage, I gave her my postcode she told me what it would cost on top of therapy for the travel from her town to me then back again.

I've since found out she's working 5 minutes from my house at an infant school for the day as there contracted speech therapist, then coming straight to me as soon as she finishes, this is twice a month, so why should I pay the £36 a month travel on top when she's 5 mins from my house for the day anyway? She's not travelling from another town to me like she made out.

Its really put me off her tbh! I feel like telling her to shove her speech therapy up her arse!

I know it's only £30 but it's principle, and the fact is she charges me a lot of money in the first place.

Prepared to be told I'm over the top 😂 but things like that annoy me. We are using everything we have got to pay for these little private things to help ds.

danni ds doesn’t get any therapy on the NHS, we have private OT and SALT that we currently see fortnightly. Our OT and new SALT don’t charge mileage but our old SALT did, though it was only £6. Like yours, I think she actually saw another child at the local primary first. Unfortunately, they usually have it in their terms of trade so I’m not sure if there’s much you can do. Many of them will have a certain radius that they don’t charge within. I agree though, it seems very unfair if she’s working nearby. And it is a lot of money - 25% extra on top. I presume she’s quite far from you, could you find anyone closer?

A tiny win today. DS did an activity page from one of his old magazines. He traced a word, traced a circle and stuck a sticker on it. We have a stack of old magazines but he has completed hardly any of these things as he’s just not interested unfortunately. I will try to get him to do another tomorrow.

Hello people - sorry I’ve been a bit AWOL lately - my email alerts stopped for some reason and I thought everyone had stopped posting - think I’ve finally caught up. I can’t remember who asked about ABA stuff and why it’s not as popular in the uk - I think it’s a complicated issue - a simple answer is that it might not be a very functional approach, I.e it’s very learnt and might not generalise to everyday use very well. Also it’s very high intensity and our nhs just can’t give that level. But it is used in some therapies, for example the way PECS is taught is very aba style. Conclusion - it probably works well for some families, but not for others. I’d never suggest a family didn’t look into it, but us a certain style and might not suit all.

@danni0509 I can’t believe how expensive private salt is. I thought it was more like £60 hour. Very very cheeky to charge you so much, can you change your day so it doesn’t coincide with her primary school day just to make a point? I agree that it would immediately put me off her. Are there other options?

@danni0509 that would annoy me too. I would have thought she should at most charge you half. Are there other people you can use if you raise it and she strops off?

@openupmyeagereyes that sounds great! It's amazing how much more our kids can do when it is their decision to do it. But hard to encourage without hectoring. I do think stickers are quite motivating and good for fine motor skills too (DD loves stickers, I think because she doesn't get frustrated about it not looking how she wants: though she does get upset if she tears them)

@Jeb86 that's really interesting. I feel very conflicted about it because I hate the "dog training" aspect of it, and when I see it being done on YouTube often it seems pretty pointless (they are just learning a response for a treat - but they have no intrinsic motivation to do it/generalise it so what is the point?) But then we also have an ABA consultant and she's been so helpful with advice. E.g. has given us great advice on how to break down things into smaller achievable steps. It's reminded me of the physio that DD had when she was younger: because she understands the development stages she knows that before you can do thing C (e.g. walk, make a friend) you need to be able to do thing A (e.g. have good core strength, do turn taking) and how to develop that thing A (which is usually a lot easier than trying to jump straight to C which is totally developmentally inappropriate IYSWIM!) So even some of the "rote learning" stuff may be a useful first step if the kids are then able to generalise. I guess that's the real test of whether this stuff works or not.

Our ABA person has also been good at helping us to think about how to remove stressors (e.g. when DD was refusing swimming lessons) - which I think is much more a Floortime/Self-Reg way of thinking about things than ABA and generally I find more useful. So I don't think they are very "purist" ABA. However, I do worry that if we had asked her to target inappropriate things (e.g. reducing stims) she would have gone along with it. It's not regulated at all and there is no guidance for parents so you're on your own really... I do get the impression in the US it's a big money making vehicle though, mainly aimed at getting kids to "act normal", though I have also seen it used to e.g. teach toileting and practical skills that will make kids more independent and it's hard to argue against that I think. Really a minefield!

Light ds has never had any interest in stickers unfortunately.

He’s refusing to go to school today, this is the latest we’ve been so far. The usual bribing (stars to get a new toy) isn’t working. I’ve put his PJ Masks toys in a cupboard and told him that he can’t have them until after he’s back from school. So far he’s still refusing.

I’ve spoken to his teacher briefly on the phone and we will meet to discuss and find a way forward but in the meantime I’m not sure what to do. Do I make it as boring as possible for him or do I try and do some activities with him here anyway? All he really wants is his toys back and to go out somewhere which isn’t school

I think I'd make it boring for the first day or two at least (otherwise it risks becoming almost stupid not to refuse IYSWIM). Goes against the grain though doesn't it, when it's also an opportunity to engage him? I guess he wouldn't do any school type stuff with you (I think I know the answer to this one!)?

DD has been tearful at drop off again the last couple of days, having been happy at drop off all term so far. I think she might be coming down with something, she's got a cough and seems very tired.

I hope your dd is ok.

Yes, seems counter intuitive do do nothing but I think today and tomorrow (if it’s the same) have to be that way. Of course he has lots of other toys he could play with though he isn’t. We’ve read a few books but otherwise all he’s done is complain about his toys in the cupboard and insist he isn’t going to school.

Danni our OT is private but ds gets SALT provision through his EHCP, it's not a lot 6 hours per year but they do also use that time to train up the staff working with him directly so that the outcomes in the plan get met daily.

That's great about the workbook open. Sorry about the school refusal, I don't know what the answer is. Do you think having the other 1:1 meet him in the morning would make a difference? We've just started to use a to do...done board with visuals for ds and it has made the mornings so much calmer. Probably not that different from a star chart though.

Sorry about the teary mornings light. I think there's a lot of things going round at the moment.

You always make interesting points about ABA light and it sounds like the way you use it with your dd has been very effective. We chose not to do it as I had similar worries about what certain therapists are trying to achieve using it. Ds saw a non ABA behaviour therapist for a while (and may do again if his behaviour becomes challenging) who did help but it was so expensive and once I learned more about dealing with Ds's behaviour I didn't feel It was as necessary.

It's Ds's flexi day today, we're having another quiet one, which is really nice.