Primary school auties: summer and the new academic year - thread 7

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

Thread 1 - www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2 - www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3 - www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4 - www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 5 - www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6 - www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Stuff like this makes me worry it’s related somehow to his epilepsy?? That somethings going wrong suddenly in his head?

When I ask his dr that tho he doesn’t acknowledge it if no signs of a fit etc which there aren’t …

I can’t speak for the epilepsy Carrie as I literally know nothing about the condition so wouldn’t like to say if it was due to that or not.

But inconsistency for ds is totally normal.

It’s why when people ask me what time does he go to bed / what time does he get up. I can’t answer specifically because it changes all the time! Depends on what week / day they are asking! Varies wildly.

Open ds was better last night too.

His mood was ok all day yesterday, and today it’s ok so far. 🤞

He’s having his medication at school from tomorrow, just sent his teacher an email essay with specific instructions. Have to buy a bottle of smoothie to send in every week and just hope they give it properly. Ie not rush it and let ds see any powder in the cup, but I have told his teacher how to suck eggs and given him step by step.

Smoothie 3 times a day isn’t the best… but I’m only giving a small amount and I’m doing it half water half smoothie and mornings I clean his teeth 30 minutes after and after late afternoon dose I make him wash his mouth out with mouth wash. Then clean his teeth thoroughly before bed.

One day I hope he’ll just swallow the tablet with water, that’s my goal.

Thanks Danni. And that sounds much better re the meds.

Sorry for the long post on this one but we are now consulting. I just wondered what you thought as there are various options, obviously we may get offers from none but I remain confused about the best option for DS who obviously I’ve talked a fair bit about. He has his diagnosis of speech dyspraxia (severe) but as I write nothing else. That said we have talked a lot about how I think he responds to/ needs a lot of the interventions we talk about re attention/ focus/ challenging behaviour in circumstances where he currently can’t communicate.

1. Option 1, resourced unit affiliated to MS school but a separate block… LA disbanded then started up resourced units in our authority so when we visited sadly they had lost all the kids and were back in infancy again! They said it’s a small provision, when we looked only a handful of kids, poss more now. Senco lovely and reassuring about things such as DSs toileting woes, really keen to have him at a time when they are looking to refill. Heavy Salt and OT input in v small groups and access to the MS school as and if and when DS could take it. But a v small set up and whilst pecs etc were around I felt it was all quite ad hoc, not terribly structured…I think there would be a place here for DS if we wanted in.

1. Option 2 is a weird one. Resourced unit in a MS but the kids split into 2 groups, the first for kids with a primary need in speech and communication the second asd kids. They are taught together but the first group which DS would be in go back to their MS school after lunch though there would be the option to stay in the MS school there. However this phrase about speech and communication being ‘main need’ freaks me out… I don’t want then issues like the biting, inattention, toileting being thrown at me and them saying DS is not appropriate for there?? Their Salt provision though is amazing i would bite their hand off for DS to have that and obv there’s a real emphasis on salt there.

1. Our local SS, big, v v mixed but segregate kids into small classes according to presentation. Have a reputation for being amazing but have a touch of arrogance that goes with it. Only one I’ve not looked round just attended an online presentation (only one who said no to looking round cos of Covid!!). Doubt or rather hope there’s nothing about DS that phases them. They have the usual Salt provision. V structured, timetables for all etc, they assured me DS would be communicating in no time there. They clearly know their stuff.

1. Option 4 a SS nearby, again they know their stuff, looked v good. Lovely when I looked round tho. Again v mixed but they split kids into classes of similar children to teach.

What worries me about the SS schools although I possibly have more confidence in them is that a lot of parents of non verbal kids say when the child goes the speech therapy/ trying to get them verbal just gets lost in the whole experience and it’s almost like the school gives up on this as the child is seen as just having additional needs and that is part and parcel. Whereas the speech units really focus on speech and communication almost to the exclusion of a lot else. I like the latter thinking, certainly at the moment. We have always felt that DSs communication problems underlie a lot of his issues.. the Head commented last week after observing the biting episodes that he didn’t feel it was sensory more frustration because he can’t communicate and I do agree with that.

Sorry to post so much but I feel we are at a crossroads and I’m terrified of getting it wrong. I just cannot go through this again… it will finish me off!!

carrie ds' sleep is inconsistent too. He's never slept until 8am but his sleep went suddenly downhill just before he turned four. All of a sudden he started waking at 3:15, 4:15 running around and turning all the lights on. It was awful and lasted for a few months until the clocks went forward and we shifted his bedtime from 7 to 8 so that he woke an hour later. Since then we get periods where he sleeps mostly until 5ish and periods where he's awake much earlier.

Regarding schools. Are all the ms schools primaries that go up to year 6 and then he'd start at a secondary? Do the ss' all go on until 16+?

I don't know much about them tbh but my understanding is that where the ms schools have a base, that the children are expected to be in the classroom for the majority of the time and that the base is used for things like SALT interventions and for social learning, that sort of thing? I think the kids are expected to be able to broadly keep up with the curriculum. I would definitely ask what the expectations are at each school if you haven't already. If you feel that that would be something that ds could manage with appropriate support then they may be a good option, if not then your ss options sound good provided they have space.

When you talk about parent's opinions, are they from those particular schools or are you generalising?

I guess my point is, that if he ends up spending all his time in the base/unit then it's still not really inclusion and he may be better off in a ss, but that's just my opinion. I think one of the only benefits is if the exam offering (once you get to secondary) is better than the ss and your child is quite academic. I just cannot see my ds in a mainstream secondary. They are huge, all the moving rooms not to mention the bullying and teasing that are likely to ensue. It makes me feel ill thinking about it tbh.

The parents views are the many I have talked to on MN often in PMs but also just other mums in my shoes I’ve come across where the child has gone to a SS. They say things like they have just given up on him talking. That would be awful for us.

The Units are all up to age 11. My option 2 one actually said no child had left not speaking even if they started non verbal tho. That took my breath away.

I kind of see the units as ‘mini schools’ in their own right, just more focused on salt, certainly my option 2, and not as large and all encompassing as the SS. So if he’s taught only in the unit then I wouldn’t have an issue with that, I wouldn’t see it as him not being included iyswim, because his ‘school’ is the unit. I guess can they offer more/ less than a SS? That’s my concern. I think if you have an asd child and a wonderful asd school that’s brilliant but we are kind of in limbo as I’m not sure really what would best suit him…

Thank you for your thought I really appreciate. No friends in RL who understand. I did go out with a couple of friends last week and opened the discussion… one said immediately about the local SS ‘god don’t send him there he will be institutionalised for life and stigmatised etc etc.’ So I stopped talking. I know you guys (Magrat etc) have such hopeful and positive experiences about SSs but I do find comments like this too common in RL conversations with friends.

Do these RL friends have any experience of the ss’s?

If the units are mini schools then it sounds like a good option. You can only go with your gut feeling after getting all the relevant information from each option and you know your child better than anyone. It’s not an easy decision

We’ve had a couple more years to see that ds needs something different. I didn’t necessarily think we’d be here two years ago.

Oh and we’re sending ds to a new school that isn’t built yet and we haven’t seen… I can only hope it’s the right decision 🤣

We’ve had a couple more years to see that ds needs something different. I didn’t necessarily think we’d be here two years ago

Just to clarify, I didn’t mean that this is where you’ll end up. Just that we are two (?) years further down the line so things are clearer in relation to our ds.

For what it's worth, I think people who have no experience of ss often have very strong opinions on them, often based on what they were like when we were kids...ss is amazing when done well, they have the resources and skills to be able to support a child properly with a bespoke differentiated educational and social experience. We have a learning journal that tracks all ehcp goals, educational or otherwise, and supports DS holistically. Yes he knows his 12 times table but that doesn't mean much if he can't cope with any changes in routine or gets so overwhelmed all the time etc. He finally has friends and feels less different than the other kids. In a base, your DS nay well still feel different, as he us still othered by the system ifswim. My DS is bright and he is being supported in his learning alongside his other social and emotional goals. Its such a hard decision isn't it. Talk to the schools to see if they think they can meet needs long term.

I think with DS that it’s so hard to know the true him with this terrible all encompassing communication issue that he has. He’s sociable and personable but just cannot speak and for whatever reason use with ease pecs or sign, I think it’s impossible to pull apart behaviours whilst that remains the case. Frankly I would have no interest in sitting in a classroom with 30 other people if they all could speak, communicate, liaise. If I couldn’t say no, yes, stop, I feel ill and so on. I don’t know about biting I think I would have throttled not only the one to one but plenty of my peers years ago.

So I find it hard to understand him and to often know what’s best.

I think there unfortunately is a lot of stigma attached to sS, I think there’s a big assumption about learning/ intellectual issues which obv isn’t the case as Magrat says. Even personally tho I don’t know anyone at one or who is an adult and has attended one.

Speaking personally, when you have a child with special needs there’s a lot of coming to terms with how different their path might be to yours and what you hoped when having children. Perhaps especially if you’re a professional with a degree, which I am. I was the first in my family to go to university and I always thought my children would do the same and have opportunities I didn’t. My ds may still go to university, he may not.

I don’t know any adults that attended a SS either, but really I don’t often ask new acquaintances where they went to school. At the moment I know that his needs are greater than can be provided for in a ms setting and for us, something more specialised is appropriate for where he is now. His SS will be affiliated with (and next to) a ms secondary school so we could have the option to move him if it’s appropriate later. I have a friend who has a ds at one of the ss’s in our area and she says he’s ‘flying’.

But as I said. The units might be best for him. Our county has only one primary with a unit, and it’s a village school randomly. It’s not near us so it’s not something I’ve looked into.

I was the first also in our family to go to university Open, for the kids tho perhaps because of my own career my aspiration for them is just that they are happy (and for DS the other things I’ve stressed about upthread, independence etc etc.) I’m a lawyer and although things are ok now (I’m experienced enough to be left to my own devices in a mid size firm) I’ve worked in big city firms where the hours and pressures have been intolerable for the MH of those working there. I would not wish that on anyone for all the tea in China! DD is money obsessed at the moment, wanting to know how much we all earn and how much you earn if you are a x etc etc and my response is always the same.. you must do a job you really want to do because you will be doing it far too long, that’s far more important than what it pays you. So if she doesn’t go to uni and becomes a passionate florist or something else creative I’d take that any day over a miserable stressed out lawyer!! Do you miss work, Open? I often wonder if I should have had a break whilst navigating all this hassle. I’ve a mad week this week with work plus kids stuff, both DC are ill, DD hacking away with a cough and temp, DS snotting all over, DH actually same as DS. If I knew I didn’t have those work commitments my heart might be pounding a bit less than it currently is (whilst thinking too about what time DS may arise…).

Danni I didn’t say but the consultants chat was v v interesting. Do try and get that comment in writing about more meds not being the answer, normal school hours are. I think school are just up for an easy life and they shouldn’t be allowed to be!

Right better get to bed!

I asked that because I don’t think you work atm Open but if I’ve completely got that wrong ignore me!! I’m just envious 🤣🤣🤣

Morning everyone! I gave just found tree decorations in the shape of Lizzie Bennett and Mr Darcy so that's me sorted!!
Re work @openupmyeagereyes, part time is the way to go I've found.

Sorry I meant to tag @carriebradshawwithlessshoes sorry!! Head too full of Lizzie and Darcy to concentrate!!

Magrat, 🤣🤣🤣🤣🤣

No I haven't worked since just before I had ds. I planned to take two years off then I didn't want to leave him. Circumstances since then have meant that work would have been very difficult with the school refusal, poor sleeping and just general unpredictability.

I miss aspects of work but not the stress or the long commute to London (not that I would do that now). Money obviously but we are comfortable on dh salary and I have good savings and a db pension even if I have no income at present. I know lots of MN would not approve but we are very lucky really.

And where are the Pride & Prejudice decs to be found??

www.royalcollectionshop.co.uk/gifts/christmas/christmas-decorations.html
Be warned, I spent too much! Bought my mum a commemorative teacup set.
I work part time 9 til 2.30, lucky to get a new job walkable from where I live. I think covid saved my career before tbh as it meant I was furloughed then I could work from home. New job I can't really wfh although there are some bits I can do but it's in a school so they need the cover etc. My problem is, where I used to work meant commuting time, so I couldn't work enough paid hours to make it worthwhile. Now, it just about works, but still can be tricky. I'm going to carry on trying to get my children's book published I think, then the dream is to open a bookshop when DS is older, where he could also work if he wanted to (he is super into maths and has been looking into accounting as a job) but of course we need the funds etc. So I am trying to be very careful with money...Austen tree decs aside...!

Working in a book shop would be my dream job Magrat, will you hire me?? Ooo I didn’t know you had written something that’s amazing. I would just want to talk about books tho, would not get round to selling any! DH has never read a book in his life so I can’t talk to any bugger in chez Bradshaw about books 🤣🤣🤣.

Exciting times… had a call with LA they think we can get DS moved in Jan with a fair wind!!

Better night thank god

Woohoo great news @carriebradshawwithlessshoes!
I'm a librarian so I can finally talk about books in my new job after working in academic libraries for almost 20 years! In my imaginary bookshop, I would hire you and our DC could do the accounts etc! We would run book clubs every day and make a fortune. In reality however hmm...I don't think there's much money in it unfortunately.
Have you read anything good lately? I've just finished The song of Achilles and I'm reading Three apples fell from the sky next. If you ever want to pm me to talk about books as a change from me ranting about the Sen system, do feel free!