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

That is so lovely dimples!! I hope that the support for you nephew can be sorted out. Is he older than your ds?

Sorry about the play date open. Hopefully it was just a one off bad day.

The early year autism person came to asses ds at school today. She came last term give advice on supporting ds in school, so this was a review meeting. She was really impressed with how much progress ds has made in a couple of months, which was lovely to hear.

Open the makaton course was just a follow on from the last one really but focused on how to discuss emotions with your child and also how to sign opposites (heavy, light etc) and also timelines. She is such an amazing teacher, everyone was signing in sentences but he end of the session! Feel very lucky that we have access to this in our, otherwise rubbish, borough!

liv great news about your ds’s progress, well done him.

The makaton course sounds good and even better that it’s provided by the LA!

Open sorry to hear that the play date was not a success. Like you I would be glad that it was a family friend rather than a school day. Hopefully your son will be on better form next time you meet up and his friend won't hold it against him (a lot of 4/5 year olds are bad at sharing). Were you at your house or theirs?

My nephews are older than my boy. I have started play therapy (through post adoption support) and the therapeutic social worker we're working with is arranging a training session for school so hopefully that should help ...

dimples it was at our house. It seems to be a bit of a phase he’s going through as he will sometimes tell dh that he cannot play with his toys, though mostly I seem to be allowed to. Friend’s ds sometimes has issues sharing too, for sure. I’m sure it’s common though with ds much more exaggerated due to the ASD.

The play therapy sounds good, I hope you both find it useful.

I’m nearly halfway through the Iris Grace book. I put it down for a while but have been reading it again the last few days. It’s interesting. Iris is very different to ds (non verbal, lots of sensory issues) but there’s a fair amount of crossover and it’s very familiar nonetheless.

Sorry about the tricky play date open. It probably wasn't as bad viewed "from the other side" as you thought - all 4 year olds have bad days but I think we read a lot into ours! We find how these things go is hugely affected by sleep and general health (often when I get very discouraged it turns out that actually DD was coming down with a cold or it's right at the end of term and she's knackered). And easier with friends they know (when DD's best friend from school comes over they kind of have a routine of games they always play a variant of so it's much easier for DD as she knows the rules and how to play). But like you I always want to keep her circle wider as even for NT kids you know friendships will go wrong now and again and I don't want to put all DD's friendship eggs in one (potentially holey) basket.

The Makaton course sounds great liv. It's amazing how different services are from area to area. I think often it comes down to just one brilliant individual delivering something really well. The parenting course we went to in Hackney was brilliant but I think it was down to the trainer more than the materials. He had an autistic sister and said he had traits himself and he just explained things really well.

DD didn't manage to do her dance class at school yesterday (I kind of had a feeling she wouldn't - she seemed less energised about it than the previous week) but her teacher came out to see me today about it and says she thinks she will if we just don't make a big deal about it which I agree with.

I think I've heard of the Iris Grace book open and I'm sure YouTube used to keep showing me videos of her (I think an advert ... but not sure what for? Maybe just the book!) Her pictures are pretty amazing. Her website says she is starting to be verbal now (I think she's 10). I found talking to a colleague whose sons are autistic (but probably more "classically" autistic than DD) that although they are very different you can see a lot of threads that join them: the underlying things they find stressful or difficult are the same, but they have different levels of sensitivity and express it differently.

I've just finished the first book I've read for about a year (Elinor Oliphant). I read it because I saw a suggestion the main character was autistic but I'm not sure she is (she definitely has autistic behaviours but I think a lot of those are a reaction to stress and a kind of self-protection mechanism, and autism isn't the only reason somebody would behave that way). Still, it was a good story.

I want to read the Jessie Hewitson book now, which has been sitting by my bed for a while - has anybody read it yet?

Light I’ve got the Jessie Hewitson book, I’ve started it but only part way through. It’s more of a ‘manual’ with personal anecdotes and contributions from autistic adults. Iris Grace is a biography, I suppose. I’ve just watched a couple of videos on YouTube, including a segment on This Morning about her. I’m now past the bit where she started painting and the cat came to live with them. It’s fascinating, ds loves cats and keeps asking for one (my parents have 3) but we live on a fairly busy road in our village and I’m not sure it’s very practical.

Iris’s paintings are beautiful, I think I’m going to get a print as I think it would inspire me every day. I don’t think ds will turn out to be a talented artist (but who knows) but it shows what’s possible for our children.

I’m sorry dd didn’t do her dance class, I’m sure with time she will feel more comfortable, it’s a marathon not a sprint. Do you have any exercises that you can do with her to help boost her confidence? There must be some for young dc, I might google myself. I did get a set of Mindful Kids cards, something like that might help?

Iris Grace's Mum and their family experiences are used for some of the case study videos on the Open Universities Open Learn course - Understanding Autism. Really interesting course if anyone has the time. It's free - and you can do it at your own pace.

Understanding Autism

Been toilet training ds again this week. Been trying on and off for 2 years.

Just quick question how long did it take before your dc were what you would call trained?

How many accidents did they have?How often did they pee?

Do they still wear nappy for bed?

I can see this being a long road

I'll be back on later.........

Thanks for the link MrsFM

I know what you mean Light about feeling discouraged too quickly. My son pushed another child at school yesterday - one of his best friends. He has never been aggressive to other children (other than shouting) but I immediately started worrying about future violence. Later I recalled the party at the weekend when a lot of the boys (not mine) were pushing and shoving. I guess one of the things about having a 1:1 that all these misdemeanors will be spotted. He seems a bit wobbly since then and currently looks like he's about to fall asleep.

To be fair to ds, he has been better today compared to yesterday.

But I won't hold my breath for too long as this happened in the summer holidays better day followed by 10 bad days etc 6 week training in summer holidays was a total nightmare.

He's still wearing nappy for school (he wees every 10-20 mins it seems) so he wears nappy for the morning at school or he will just be spending the full time being changed and having no education (he still only doing 2.5 hours a day at school) soon as he's home by 12 he doesn't wear nappy for rest of the day until after his bath just before he goes to bed when I put his bed time nappy on, so he's having 8 hours a day ish with no nappy on, we have been staying in during the afternoon while it's been so cold.

While at school his 1-1 takes him to toilet every 30 mins pulls pull up down and he goes on toilet while there too.

I'll send him with pants to school when he's better at home, less chance of spending his 2.5 hours a day there constantly in the toilet having wet clothes peeled off him.

danni I’m not sure how helpful this will be... we started training ds for the second time in August 17 when he was 3y7m. We used the ‘Oh Crap’ method that time. Wees he got relatively quickly, I honestly can’t remember how long now, but we did have a few accidents after that. It took him a couple of months to start asking for poos on the potty so before that we had poo in the pants once a day or so. Even now he often needs prompting to go for a wee though he always takes himself when he needs a poo. He is still in pull ups at night. Before he started school he was dry most days (though would regress when we tried pants) but since school he’s been mostly wet. I think he goes after he wakes though so it’s a choice. That’s my guess anyway.

I meant he was dry in the morning. He seems to have a bladder of steel, goes about every 4 hours left to his own devices. He doesn’t drink enough in my opinion though.

Just caught up, sorry, haven't been on the thread for a while. open sorry the playdate didn't go well. danni toilet training is a bit hit and miss here. Started in the easter holidays last year and he is now down to about 7-10 accidents a week. It's been a long hard slog.

We had ds's termly review at school today. The senco wants to apply for an ehcp for him but she thinks the lea will reject the application without an autism diagnosis. Unfortunately his autism assessment is on hold at the moment because his consultant has left and there is a massive backlog. So we're stuck at the moment.

I've been having some success with a few different ideas I learnt on a course I went on about sensory processing disorder a few years ago. I found the information from it when I was organising the dc's paperwork (6 box files done 300 to go!) and it's been working quite well. DS seems to like being wrapped in a blanket and rocked, swinging and spinning. We are hopefully going to a special needs gym at easter which has lots of different sensory equipment to try out like hammocks with ball pool balls in and different indoor swings.

Elliejjtiny have you seen those sensory body sock things that you can get? Sounds like it might be right up your DS's street! Purple Ella has a video where she shows hers off and it looks nice! Kind of a sensory hug/stim.

Sorry your Dx is on hold. Sounds like it might be worth a try though? I know a lot of refusals get overturned on appeal, and it's not supposed to depend on a Dx (though I'm sure a Dx helps).

Danni we started potty training much too young (about 2.5) because DD's nursery expected them out of nappies but she was in no way ready. I think we are now pretty much there (just 2 years later...). I would say she has poo accidents only a couple of times a month (usually e.g. if we're away from home or something unusual is going on - though I guess you can always rationalise things looking back, maybe it's just random). Little wee leaks are probably more frequent but not really a problem (just tiny and she just needs a new pair of pants usually, which she can often even get and sort out herself). We're still on Movicol daily at the moment... I'm trying to fade it out (which we've tried several times before and has always ended up with poo holding and accidents again but I'm hopeful we might actually manage this time).

I think basically if their proprioception is not there then there is nothing much you can do - you just have to wait for them to be ready. DD's proprioception is definitely stlil a bit off, but I think the main thing that causes accidents for her is (1) being focused on what she's doing and not wanting to break off to go to the loo and (2) sensory - I think she gets anxious about the feeling of no. 2s so it can quite easily create a negative feedback loop.

Is there any chance your DS is constipated? If you look up encopresis it might surprise you - the symptoms can be not at all what you would expect from constipation. DD had this and the Movicol definitely helped a lot.

Hope the play therapy is good dimples. It must be a bit of a worry seeing the school not supporting your nephew properly, hopefully it will get better and the EHCP will be accepted first time!

I haven't read Iris Grace but I am halfway through 'fingers in the sparkle Jar'. Thanks for the recommendation open. I'm loving it, I can totally imagine my ds thinking in the way that Chris Packham writes. I'm quite thankful that ds is not that into animals though!

Yes I totally agree light, it's he woman who runs the courses that is the reason they are so good.
I also felt the same about Eleanor Oliphant, autistic traits but not autistic. More a product of her upbringing. I really enjoyed reading it though.
Sorry your dd didn't manage her class, hopefully she will next time.

Ellie it's definitely worth applying for the EHCP. The diagnosis should not make a difference. I'm always spouting it on here but the legal bar for getting a needs assessment is that your child MAY have SEN and that they MAY need the support of an EHCP. That is the only requirement and it sounds like you have enough proof to apply.

I've had an autism heavy week this week, been to a coffee morning Monday, my course on Wednesday and I'm going to go to a playgroup with ds this afternoon, I think (if I can get him away from you tube!).

Ellie my DS does not have a diagnosis but he does have an EHCP. I know where I live the form that schools have to fill in to request an EHC assessment requires schools to submit evidence of at least two complete support cycles - but this is not required by law (as quoted by Liv above). We felt that my nephews' (and son's school) were faffing about too much and had a rather defeatist attitude towards applying so we have just done it ourselves.

My DS toileting accidents are reducing at school but they always happen at lunchtimes and break times when he is meant to have 1:1 support but I don't think he is getting it. I have just arranged a meeting with his class teacher - time to be 'that parent' again.

Light and Liv I need to find some time to read all your book recommendations. By the way do you know that you can borrow books for free from Cerebra. Danni I borrowed a few from there re toilet training.

The play therapy has been great so far. Although I hated being filmed playing/doing tasks with my boy the therapeutic worker was so positive and encouraging about how I handled it and how engaged my boy was that it has really given me a boost.

That's wonderful about the play therapy dimples!
I had no idea you could borrow books from Cerebra, that is really useful to know.
Good luck with the meeting.

Yes I didn't know that either - thanks for the tip!

ellie I agree, the school should apply for the EHCP regardless of a diagnosis if they have sufficient evidence that the support they are currently able to offer is not sufficient. I’d also include any professional reports that would support this. We used a charity called Core Assets (now closed) who gave us an outline for a parental contribution. The special needs gym sounds great, I wish we had something like that here. Are you also in London?

liv glad you’re enjoying the book. I’ve finished Iris Grace. I really enjoyed it and the part that describes the approach to homeschooling was really interesting, i.e. to take topics they are interested in and use different facets of it to engage them in many different areas of the curriculum. Of course this is what schools do and most parents don’t have to ever really think about it. There’s a passage towards the end which I thought was put beautifully: ‘she will always be on the spectrum. She slides along that spectrum from moment to moment, and what we see on the surface is a fraction of what she is experiencing and feeling.’. The book did leave me feeling somewhat inadequate as an autism mum because it’s so hard to get ds to engage with school-type work and I feel like I’m not creative enough or persistent enough with it. But that’s my issue, overall I thought the book was great and very inspiring.

dimples glad the play therapy is good. Yes, it must be strange being filmed and then analysed but great that your feedback is positive.

Sleeping has been rubbish this week again, ds has been waking earlier each day culminating a in 3:30 start today. He’s so tired, poor thing but just won’t give himself enough time to fall asleep again. We’ll be giving him the melatonin tonight. Otherwise he’s been ok. Still a little resistant to school but we get there fine and, as far as I know, he’s been ok. Parents evening next Thurs.

I should say that it wasn’t just the school stuff that left me feeling a bit inadequate. There are all sorts of other things they do - arranging private visits with musicians and orchestras etc. and starting their own weekly autism ‘explorers’ club at their house with all sorts of amazing themes. It’s pretty impressive.

Next I want to finish Good Ideas. I really need to get into the habit of reading with a note pad and pen on hand to make notes though...

Oh, and on Monday I went to a presentation given by a lady who is a private consultant/therapist who works with families with autistic children uses a variety of different approaches. She has some online courses, some of which are free so I may try those and see how beneficial they are.

I'm sorry the sleeping is rubbish again open, finger's crossed the melatonin does the trick tonight.

I think it's hard not to feel like we can always do more for our kids. I was thinking about this the other day, I think even a couple of months ago ds was not in a place to be able to learn, he was too wired an anxious. Currently ds is really into letters, numbers, shapes and colours, which I'm trying to encourage everywhere we go while he is eager.

I think in our case the more important thing for ds is to know that at home he is allowed to relax and everything we do is to try and keep him calm and regulated and if that means an entire day of you tube videos so be it. To be honest I'm probably guilty of not pushing ds enough though.

liv you’re absolutely right, I believe it’s really important too. I think that’s something we have a handle on though and in truth, ds is probably much less easily overwhelmed than other children might be. We only have the one which makes it a lot easier but our lives are very tailored to accommodate his needs and what he can and can’t cope with. The book has a lot of this too. They didn’t leave the house much for the first few years as Iris struggled to cope and used music therapy, art, sensory aids and the cat, of course.

I’m hoping ds will turn a corner with his willingness to learn at home too. I managed to bribe him to do some phonics for about 20 seconds earlier and the other evening he did some cutting by himself with the push scissors (Light’s recommended Kumon cutting book).

Ds had a 10 minute nap today, he woke when I had to move him. He looks so tired but on a second wind now. He may crash again later.

light I've seen them on special needs websites. They have one at the special needs gym we are going to so hopefully we can try one then.

open the gym is in bristol. About an hour away from us but worth the trip I think.

With the ehcp I think the problem is that his problems are quite vague and he doesn't have gdd so without an official diagnosis his problems sound like something he might grow out of soon. I hope that makes sense, it's hard to explain.

We had a good day today. We went to a soft play with some sensory things in it which ds loved. He seems to like anything he can swing or spin on best. It was really lovely to see him so happy and I ended up taking loads of photos of him smiling.