Thread 14 - Autism and any other SEN

[dimples76]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

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

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

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

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

Yes, Carrie he has been totally off it for 2 months and no sign of any absences. So that is something to be very thankful for. What's the position with your boy's epilepsy?

Complex @dimples76 !!! Was taken off it at the start of the year for 2 months. No issues. We then went ‘digging’ because tbh I’ve been so traumatised with the epilepsy thing so had a private eeg done over 24 hours. It showed epileptic form activity though no seizures. I then went into panic mode that he was going to have a seizure and so we have left him on a low dose prescribed by a private dr (nhs say this course of action is fundamentally wrong.) I find it v confusing. Some studies show even epileptic form activity can hinder development and frankly the fact he didn’t get a clean result worried me immensely. So psychologically I feel better tho get a constant bashing from the nhs at every appointment!!

have you noticed any changes for good or not since he stopped the meds? Maybe I’m just a wuss. I actually think I’ve ptsd from witnessing seizures which I appreciate affects my decisions hugely.

Hello, can I join you? It's my DS2 (6yo) that I would like to talk about. I am fairly certain he has ASD, ADHD or both and possibly dyslexia as well. I have an older child (nearly 16) with ADHD though he wasn't diagnosed at this age and I have ADHD myself but pretty well managed with medication and strategies now. Also DS3 who is 3 and I think is NT but then I thought DS2 was NT until he was about 2/3 as well!

DS2 has an appointment for assessment in Nov and we are on another waiting list for some early intervention thing that I didn't really understand what it was (we are in Germany) but I just went for everything they offered which sounded like it might be useful. I wanted OT as well but it seems they tend to wait until the children are at school before they look at OT. He is in speech therapy because his speech is really unclear. I have queried GLP because although his speech has not overall been delayed, I do feel like he processes speech as blocks. For example he loves trams and he can reel off the entire "Next stop, blah blah. Change here for XYZ" from the recording, including all the incomprehendable German words - streets are often named after historical people. And he also mixes up similar-sounding words or phrases. I can't think of an example though. Anyway his speech therapist is lovely and handles bilingualism well but she hadn't heard of GLP.

He won't start school until next September luckily, but as we have just moved house I've pulled them both out of Kita (nursery/preschool) and just waiting to hear if/when they have a place at the new one. So he is basically driving me bonkers every day because you have to engage him with tasks or he gets totally OTT and hyper and then he just won't wind down however much you let him run around etc. Some days I feel like I've learned loads since DS1 was this age (which was honestly a bit of a disaster!) and then other days I feel like I'm right back there in that really hard place except there are TWO of them and I worry about it. I can't dedicate the intense one to one attention to help DS2 calm down and co-regulate him if it means leaving DS3 to fend for himself, because he's too little. I can't ignore DS2 because DS3 is sometimes upset or scared by his behaviour and then at other times he copies it which is unhelpful.

Hi @BertieBotts welcome! @dimples76 good news about the epilepsy.
We are well, settling into term. Ds'teacher called me after I sent a long message about pda etc. Call was positive but thr issue again is that they see his potential and then push a bit, then the demands get too much and he gets v anxious and upset. I have sent the link to thr pda society website and she says they're having a cpd catch up on Monday after school and will talk about it. There's one ta in particular who is quite strict and old school (I heard her say-get your bag, get your bag' to DS at drop off the other day) and I can imagine how that plays out over a day...I know with a.lot of asd kids you have to be clear and form, but actually that's the worst for pda where you should be avoiding issuing demans and pick your battles instead. Someone told him to sit up straight apparently too so he hurt his back sitting too ridigly as he was worried about being told off...so apparently she has toned it down a bit!! I think pda needs such careful handling and if you've not experienced it before, it's hard to get your head around. Especially if you're quite hard-line in your behaviour management etc. Not a good mix!! But DS seems happy enough mostly so...! Six weeks until half term and I'm so looking forward to it, already booked pumpkin picking and our museum is doing a late night event thingy. Well, 5.40pm! DS wanted one of those 100 days until Xmas calendars so I might regret it but I bought one, we can put it up tomorrow!

@LydiaWickhamsBonnet pda stuff sounds complex , never considered it in relation to DD but what you say about clear and firm for ASD does chime a bit - I feel like some stuff around that including inflexible structure to the day (at current daycare) is actually not something that suits DD. I will read more about PDA but it’s probably hard to gauge if it does ring true for her given that it’s hard to assess how much of our ‘demands’ she understands.

hi @BertieBotts my DD is 5 but sounds quite different to your DC, mine is mostly NV. I also live abroad though (NL) so can relate to navigating SEN systems abroad. Also post on here because there’s really not an equivalent with any level of traffic in NL. Sounds likens handful for you having 3 at home , hope the school lists work out.

@dimples76 really glad that the new teacher sounds constructive. Still get mad when I hear you mention that course tho - glad that’s nearly done..

we have our chat w DD’s daycare tmro, much of which will focus on her next step. We are quite nervous tbh. We’ve done a lot of research and had a lot of conversations in last month or so and what I’d clear is that as parents, we can’t choose a SEN school (over a care type place) if it’s not also supported by current school. We are also pretty sure we are not comfortable with her going to the care place at this age and stage without trying a school set up. So I suspect we may have a fight on our hands. I think I mentioned the current place is connected to a SEN school - I had emailed the occupational psychologist asking her to connect us so we could have a viewing. I should have just emailed the school - she came back saying that after sharing DD’s profile the school is not open to us viewing as there would be no place for DD. I was so angry by this response.. I see the kids going there every day and many of them have clearly severe needs akin to DD. And also we learn a lot from every school we view / chat we have even if it’s not a fit. I truly wonder what they shared in terms of her profile. Really glad we viewed the other one independently but as I say, expecting a battle. Will let you know how it goes tmro…

Oh @Ahna65 so stressful! Why are they go against assessing her? Such Prejudice! I totally understand wanting to try her in thr sen school and not limit her potential when so young. Good luck, you've got this! Re: pda, we always wondered why traditional discipline just made DS' behaviour worse, then when we read the pda society website it was such a light bulb moment. Like they were describing our child! He copes generally at home as we can provide a low demand environment for him but school obv has more challenges especially as he's getting older. I do feel for him but I also know he needs to grow up and learn some resilience in the world if he's to have any type of independence later on. But it's so hard as I just want him to never be sad etc. A parent's path, I think.

@Ahna65 so there’s the care place, then the school affiliated to her nursery… and then the independent school which was the ABA one, is that right? Would her current place need to agree to the independent one if you wanted to try that, or can you bypass them because it’s ’independent’? I think until you hear them out you are temporarily stuck. If you disagree with them can you appeal, as here? Can you agree that she goes as a trial if they are really pushing back? Hope it goes ok tomorrow. Let us know…

@LydiaWickhamsBonnet what you say makes perfect sense, why isn’t a Sen school already well informed about pda though? I do get what you are saying though about low demand etc etc. what I never quite understand about pda is how if translates into life generally, so every day at work, in society, in life generally we are told what to do. For different reasons I suppose… because we are the employee and our employer is the boss, or for safety reasons, or just ‘because’’ in some circumstances! How then do you prepare a Dc for that with a pda profile??? I never quite get that. I tell DS what to do all day, it doesn’t seem to inflame him, ‘get your coat’ ‘get your shoes on’ etc. so I’m not sure for him he has that profile really??! Without those prompts he wouldn’t do what he was supposed to be doing so it’s necesssry for him.

@carriebradshawwithlessshoes no it’s not the ABA one, it’s a SEN one just in a different organisation than the one by her daycare (and I think the smaller ‘feeder’ class is not on offer at the affiliated one). I do wonder if it being outside the organisation might mean less of a fight, like they are just like ok sure go for it good luck..? But the complication is probably we need to retain her place on the care wait list otherwise I think it’s a very realistic scenario that school environment doesn’t work at all, she’s at home with us and needing to start all over in the waitlist. So we can’t burn our bridges really.

@LydiaWickhamsBonnet i think they are just quite rigidly focused on how severe her needs are / how they don’t see her at all in a class. And it’s at times hard to disagree but where we do differ is wanting to give it a go, given that she’s young and who knows maybe she would flourish there.

but then today has been a combo of huge physical meltdowns, her lodging herself under the sofa to the point her head is stuck, repeatedly, taking her nappy off every time we put it on, eating wire wool I had stuffed for mice, climbing out her car seat (on that, any tips for a harness they can’t get arms out of??).. and various other things then i do frankly think yeah, I can’t see this working out at school. But I know we need to keep some hope and we just surely have to at least try!!

ive been frustrated today and snappy at times. DD2 has reacted to it a lot ‘mama don’t be angry DD1 is being sweet’ type stuff, and it makes me feel guilty but it’s also endearing to see her being defensive in a way, even if it reflects badly on me…

@carriebradshawwithlessshoes I don't think they have many kids with DS' profile there, tbh. You see, if I told DS do this do that, it would majorly set him off and upset him, he'd dig his heels in etc. More fights, more delaying. Less compliance! So I say more like 'oh DS, it might rain, do you want to get your coat?' Rather than 'get your coat, DS'. We just adapted like that tbh and it works for bow, keeps his anxiety lower, and I don't know about preparing for adulthood really, but I don't think telling him do this do that now would help right now?? I'm hoping as he gets older he'll cope more. He will follow rules now but not just arbitrarily, they have to make sense and be logical etc. I could see him being self employed in all honesty or in some type of non hierarchical setting for work. It annoys him when people talk to him like a child as he wants to be an adult already, but isn't obviously ready for all that responsibility, so it's a process I think.
Good luck @Ahna65

@LydiaWickhamsBonnet thst makes sense. I think a lot of my language with DS is around keeping it simple and easy to understand which is why I talk as I do… quite command like! Some would say I should just say ‘get coat’!

@Ahna65 you need a crelling seat, have you read about them on here? No personal experience but there’s sooooo much on here about them I feel I know all about them!

Or I might say 'oh it looks cold out, let's take our coats'
I've said before I know, but I prefer it when people take that approach with me too. Like when colleagues just bluntly tell me to do something, it always used to upset me and make me feel anxious and I never knew why. I'm generally happier now I'm a bit higher up and am left alone more to get on with my job 🤣🤣

Good luck with the meeting Ahna.

Carrie I am a bit similar in my communication style with DS due to his cognitive difficulties. I like the way you have described that you talk Lydia which seems more respectful and collaborative. Unfortunately, I don't think DS would be able to extrapolate the key message. My approach is very much, 'DS, coat on' but if he doesn't put it on then I will just carry it/put it in his bag and hope that he realises for himself that a coat is needed. I do try to limit the demands though.

One of our biggest challenges is that DS still seems locked in toddler phase of wanting what he wants, now and raging if his demands are not immediately satisfied. Yesterday, we had a lovely outing as part of the heritage weekends climbing up to a belfry and ringing church bells (one of DS's special interests). Afterwards I bought the DC ice creams as we walked back to the car. DS then decided that he wanted bubblegum too and then when I didn't buy it for him started hitting me, making threats, calling me stupid and ugly.

@carriebradshawwithlessshoes had never heard of a crelling seat but indeed looks perfect. I think she'd actually quite enjoy the sensation too! Will get ordering.
Thanks for the good wishes for today. I was looking again at the notes / agenda last night and missed a section I hadn't seen before - it's about home / family life. Basically the 'metric' they give has been downgraded from good to moderate, and they've written that they note that we often find it very hard when she's not slept etc, they query if us as parents are struggling because sometimes she is in dirty clothes - this has REALLY wound me up because indeed I do struggle with some stuff but DDs are never in dirty clothes.. I organise their outfits every day and always clean!! DD does tend to immediately chew her jumper / top so it doesn't look smart for long, and I think maybe the fact she's so bad around having hair brushed means it does often end up in a bit of a 'top knot' and give a general impression of messy, but I really am not happy that we now have in writing on her files that she is in dirty clothes? And it's flagged as a point of action for her care plan. Probably me going in angry and defensive is not the best tactic but this makes me so mad.

Ahna best of luck for the meeting today. Best solution I think is to calmly state that the dirty clothes comment is untrue, state the reasons why, and ask for it to be changed as it is misleading.

Ahna that comment would really upset me too. My boy is a clothes chewer too and also spills food and drinks on himself all the time so he only ever looks smart for about 2 minutes! I agree with Open's advice. Also, as you have said try and focus on the key issues about placement and try not to let this inaccurate feedback knock you off track.

I would be furious about that. At end of day she is at a nursery getting covered in crap… I am sure you do dress her nicely but I never sent either of mine to nursery in their finery given the activities they were undertaking! Who does?

isnt this discussion/ report to be about the best educational placement for her? What does her clothes this have to do with it??? No certain inferences can be drawn about a child’s clothes not being pristine imo… I know she is clean etc etc, I’m just saying!! Grrr (on your behalf.) I would be going beserk (and getting kicked repeatedly under the table by DH!!)

It was her 6 monthly review type meeting so although focus was indeed next steps given her age and stage, other topics too.

Overall, went OK. The clothes comment came from some fill in member of staff during the summer - must have been a pretty one off thing? I was like, OK, why write it down then? Her group leader agreed that she's always clean (at least at the start of the day...).

On future steps, they did listen to our perspective. Sounds like being frozen out the school viewing is from the school not the current place, they also thought it was "off". They said the school had observed all the children in the summer. News to me, I asked for the report on DD. The occ psychologist said it's not worth sharing, it's 2 sentences - so sounds like this school has written off DD on the back of an hour or so observation on one occasion?! Occ psychologist agreed it was bad, it's also SO bad in the context of there being like 2 or maybe max 3 options available to us in the region that would be possible for DD! They agreed that the school we viewed could be good option at least in the care hybrid type feeder class. In terms of whether it's good to already test that / have that school observe, we decided to wait a bit. She gets an ipad next week which will speak short phrases etc - no idea if she will take to it but intrigued. We figured that maybe let's try that for a month or so and see if it seems like it will help progress her communication at all and maybe gives the school more to go off.

Although wasn't as bad as expected, I find these meetings SO draining - think it's the stress before too. And even though my Dutch is decent by now, advocating in another language is exhausting (but I think it does sort of give me an emotional shield in a way, which I appreciate?! hard to explain).

Hope everyone had an OK Monday!!

Ahna a whole extra layer of stress with the foreign language and different approach. I hope dd engages well with the iPad. Do you see frustration in her due to limited communication or does she not seem to notice?

dimples how is ds settling in?

carrie how is ds doing this term?

Apologies to anyone I’ve missed.
<waves> to new posters.

We’re doing ok. Yesterday was a little wobbly but better today. How I long for a bit of (positive) consistency!

Yes @openupmyeagereyes definitely see a lot of frustration. Leading us to things only gets her so far. So indeed fingers crossed!!

sorry about the wobbles but glad today was good.

@Ahna65 whst do you feel she gets frustrated about that she can’t tell you/ lead you to? That’s the thing with DS, he’s so chilled a lot of the time (with us) there’s no burning desire. As you said before @Ahna65 yes, he may want to say go swimming, but if it’s not there in front of him I don’t think he’s sitting there stressed that he can’t ask me if we can go iyswim.

Hes good open, absolutely fine. Obv we don’t have constant feedback from school but he’s happy to go, happy to come back and happy to potter with us on weekends/ outside school.

Hello...I think I'm on the right thread (is this the goose and carrot? A poster recommend it to me for virtual support but I can't find any topic titled goose🙈)

If I'm not in the right place can I just let off some steam here? I feel like I'm drowning, absolutely overwhelmed with everything at the moment. I have DLA paperwork sat on the side to fill out, occy want me to meet at the school as he needs more support, an Alliance questionnaire to fill in before a 1:1 meeting on Friday, a school ehcp meeting with senco on Thursday. I'm working in between all of this and my dc who has been swinging between not going into school or being late by two hours and were only onto the third week back. (And did I mention he's still awake?) Does anyone else get really really (really!) overwhelmed with it all? I just want to cancel all of it and hide under my duvet. It's too much. Just too too much.😥

Hi @BigTipTop welcome! The goose and carrot is over on the sen chat board but you're more than welcome here too! And yes, all.the admin and mental load gets too much for me too! I just try to focus on one bit at a time and just breathe!!

@BigTipTop Yes it's really overwhelming sometimes and yes that feeling when they are still awake and you so want to be in bed...

It's definitely hard to juggle with work too. I'm lucky my employer is pretty flexible. Is yours? Do you have a DP who shares the load? How old is your DC, what's the school situ - SEN/ MS? Hope they went into school more happily today.

Well done Ahna. Sounds like a constructive meeting. Hope that things go well with the ipad.

Welcome BigTipTop. All the paperwork/meetings/appointments etc always seem to land at the same time don't they. I am very fortunate that my boy sleeps well.

Open hope that things improve again. I keep forgetting that it's only been a couple of weeks since the start of term - feels like longer.

DS seems to have settled pretty well. Certainly going by his behaviour outside of school he seems on pretty good form. One of the TAs called me yesterday (about how to help DS get changed after PE). She said in passing that DS is keeping them on their toes and that it would be dull without him ....

I have the CAMHS ADHD training all day Saturday. Yesterday, my SIL (in Australia) posted on WhatsApp a photo of laundry folded by my brother saying it was a wonder what ADHD meds had done. Bit of a surprise as I didn't know that my brother thought that he had ADHD or had been assessed. Made me feel a bit sad, given that we used to be v close and resentful because we're still waiting for meds appointment. Obviously won't say this to my brother though!

In other news I have joined a gym and have a personal trainer. Only week 2 but sleeping much better.

Oh good on you @dimples76. when are you fitting the gym/ PT in? Though I fear I’m past the point of no return for a PT, they would probably take a look at me and say they weren’t paid enough 🤣🤣.

For those of you in 40s, do you find you have changed much in recent years? I actually was looking at this on mn the other day. I feel I’ve lost my slim(ish) pear shape and am becoming very matronly and apple shaped. For the first time ever I’ve got a bust and a stomach which is not a shape I really like! It’s all very unsatisfactory tho the consensus on mn seemed to be this is typical for this age and there’s not a great deal you can do. It’s not about weight so much but shape.