Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

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

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

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

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

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

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

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

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

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

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

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

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

Thanks, the bad news is that the DC are still awake. The good news is that the hotel room has a separate room within it which they are in. They loved the show but DS had a meltdown whilst we waited for it to start. My friend and family couldn't get over the mood swings (from excited to raging to happy). I am so tired. Trying to remind myself that my favourite sound is the DC laughing together ...it's not so lovely to my ears at 10:30

Open glad the week ended well and happy half term! Just starting with DD.

Ahna great re the sleep and school. Re the bath I don’t think that’s uncommon and yes, maybe constipation. I have heard a lot of people say similar, even with NT kids.

Dimples, bless them, what time did you get to sleep? Hopefully not long after you posted.

things gone from bad to worse here. DS in apparent agony with his stomach, GP assessed for appendicitis which it wasn’t but then had further tests which came back positive for giardinia (sp)?? I’d never heard of it, has anyone? So I’ve had bloody days in the bathroom with him screaming rounded off with a mega strong anti biotic which we were told would increase the cramps and diarrhoea but would kill the parasite. So 🤢🤢🤢🤢🤢 really.

Giardiasis!!

carrie that sounds awful, poor ds. I hope the AB’s work soon.

dimples hope you got some sleep.

Dimples, out of interest do you think the epilim has affected DSs moods at all, for positive or worse? AEs are mood stabilisers aren’t they, just curious.

Hello all. May I join?

Nearly 12-year-old DD is probably autistic, maybe ADHD as well. On the waiting list, but told it will be about 3 years. We have done some work with a lovely counsellor, which has helped a little, but things are such a struggle right now with hormones.

We home educate, and I have two other DDs (both younger; youngest possibly also autistic, but we're not sure about that). DD1 can be violent when frustrated and I'm just really struggling with how to approach behavioural issues when there's a high chance she'll hurt me in response.

She's a sweet, clever girl, but has very little emotional regulation.

Feeling a bit lost, tbh.

Hi GrouchyKiwi

Do you home Ed all the dc or just dd1?

Do you know the triggers for the behaviour? The key is to try and prevent her getting to tipping point and therefore reducing the incidences and duration of the episodes.

Hi openupmyeagereyes

Yes, we home ed all three. We started before we knew DD1 was autistic, which was a blessing because she's definitely not school shaped.

Triggers seem to be just every day life, so it's hard to prevent a flare up. Even when I can see her starting to get frustrated - whether because she can't do something or the sister she's playing with won't do what she wants - I'm never early enough to get her to use the techniques we're supposed to use. Even suggesting she takes a moment to breathe or whatever can be the thing that tips her over the edge. Everything has to be on her terms, but that's not possible in a family so I don't know what to do with that.

@GrouchyKiwi sorry for my ignorance, but how do you home ed? Do you mean via a formal EOTAS package? Just interested.

We use a mix of text books, internet resources, my own knowledge, and group meet ups to home ed. I have a degree in English lit, so that side of things (as well as history and geography) I cover on my own. I use a lot of work books for maths and science to make sure I cover everything in those subjects, and for the rest (music, art, topic work etc) we follow their interests. It's fun, though has its frustrations!

Oh I see, I wasn’t sure if you had external people, I’m very clueless. Can you (as in can anyone) get funding to get external people?! I guess that would have to happen if the parent hadn’t the time/ expertise. Sounds like you do a fab job though!

I have an 11 year old DD @GrouchyKiwi and although shes NT hormones are terrible at this age so I completely sympathise there! It’s a tough age all round I think,

There isn't funding, but I think if your child would have qualified for support at school you can get ESA/DLA (I am not sure of terminology), though I am not certain of this at all. I don't think we'd qualify so I've never bothered trying. I know some people do apply for support in certain circumstances.

My children have never been to school so there's no oversight either, which isn't necessarily a good way to run things, IMO.

I agree with you re this age being difficult in general. It's hard to tell what's typical pre-teen angst and what might be difficulty for other reasons, but in the long run I'm not certain whether that matters! I just need to find a way to help her through it.

Why have they never tried school? Not at all being critical and sorry I’m not helping much, I think the ‘would they be better at home’ conundrum is one many of us think about. I do all the time with DS, I read a post like yours and think how great it sounds then feel I’m selfish for sloping off to work when DS may fare better with me…!

im not sure re DD other than to say I know it’s a really hard age. Would you not consider a placement for her at the right school to try and draw in their expertise? Waiting lists are so long aren’t they, I guess trying to pull in the right help privately (I’m thinking EP type help) otherwise is the most immediate option if that’s possible?

GrouchyKiwi lots of positives to homeschooling. I find it really interesting.

Wrt dd, I suppose the key is to gets ahead of the curve by creating an environment where she’s more regulated in general and her baseline is lower so that when she does get frustrated, or whatever, she’s only getting to 80 rather than 100. Also, practicing the skills when she is regulated so they are easier for her to access when she isn’t. I’m trying to remember in which book i was reading about this recently. I will check and post.

How communicative is she? Have you tried the collaborative problem solving approach with her?

I appreciate it’s a lot harder when you have more than one child.

carriebradshaw We decided to home ed when DD1 was an anxious pre-schooler (now we know why!) and friends of ours were doing it very successfully. We thought we'd give it a go, with school as a back up if we ever needed it. We love it, it really suits our lifestyle, and makes it easier for travelling to NZ etc.

We looked at a couple of schools, but there's nothing around us that would suit. Anecdotally (from the counsellor) the schools are really struggling with SEN kids here. She sees a lot of girls who are refusing to go for various reasons and the schools can't help them. It's a real struggle across the board, really.

openupmyeagereyes That's helpful advice, thank you. I know she did some practice with the counsellor; I'll have to work it in daily.

She's sometimes very communicative and other times finds it impossible to talk things through (and we get a mini meltdown).

Do you ever start to feel like you know what you're doing? I feeling like I get everything wrong.

carriebradshaw How is your DS today?

I have never heard of that condition Carrie. How is your DS now? I don't think the Epilim has had a noticeable impact on DS's moods and behaviour. Maybe I will only see it when they stop ...the plan is to start weaning off this Summer.

Grouchykiwi has your daughter had any input from OT. I guess that they would say the aim is to get in a more emotional regulated state with a sensory diet so that the triggers don't have such a big impact. It's hard when the triggers are unavoidable things though. And no, I don't think that I will ever feel like I know what I'm doing (or at least the feeling is very fleeting).

Ds just totally hyperactive today, less moany but this is often how his unwellness plays out. I literally cannot keep him still. He seems physically capable of sitting down. I’ve just counted him jumping on the spot 72 times….

School will be loving this behaviour tomorrow….

also started the new meds. Maybe foolish as he is only just finishing the anti biotics. Anyway he got up for the day at 1.30 and then threw up so that’s a great start isn’t it?!

Hi
Our 11 year old daughter has just been diagnosed with ASD following a very difficult time moving to senior school. It makes sense of a lot of things from when she was younger and her recent struggles. She's been very anxious and having panic attacks in school and has to come home on a number of occasions as a result. We're hopeful that now we have the diagnosis things will get easier, but are also considering whether she'd do better in a different school setting.

One of our main questions now is around general parenting of an autistic pre teen - how do you maintain boundaries but also know when to cut her slack?! How do you talk to grandparents about it? Any resources you have found especially helpful would be very much appreciated and I'll do some reading of this thread and the forum too.

She has significant sensory issues and has been seeing an OT for a few months but hasn't found it especially helpful, so we are thinking about finding some talking therapy for her, and looking for someone who specialises in autism/young people. Any tips on what to look for there would also be welcomed. Thanks so much.

Hi all, sorry I've been a bit rubbish at keeping up! We're OK, on half term now. Had a great 121 swimming session with a woman who was great with DS last time but felt she was a bit grumpier with him not doing exactly as she said this time. He did really well though, lots of focus, and he got out without jumping back in! We went for a nice lunch on the way back as a treat. Back home now and shatter3d!!
We're going out to a nearby city for the day tomorrow and then to a friends house later in the week before we brave a trip to London on a coach on Sat...eek! DS is tired after swimming and is missing school, he tells me. It won't be long till Easter will it now, mad! Lovely spring weather here today has made me feel really positive (especially as dS is pushing his bedtime back later and later!) And I'm writing poetry again, which always helps.
I hope DS is feeling better now @carriebradshawwithlessshoes and half term is going well @openupmyeagereyes and that everyone else is doing OK. I met up with an adult friend who is autistic last weekend and she has decided not to mask and just live an authentic life. She is so lovely and refreshing in her authenticity, but also calls.out other people's BS, she is a tonic!

My daughter has just had an ados screening as part of her salt assessment and the report shows she scored 14. Does anyone know what this score means?

I'm sorry Mummytodo, I don't have any idea about that.

Just had a letter from the local neurodevelopmental team saying that the referral from OT re DD1 doesn't have enough supporting information to put her on the pathway. They made this decision in November and only posted the letter last week. Irritating. We are invited to send in more evidence, but I really don't know what more we can say. This is, I guess, when it's difficult not to have school information because we home ed.

I guess I'm trying to work out whether there's any point proceeding. We already make a lot of adjustments for her at home that help her with learning, focusing, and communicating, so maybe there's nothing they could do anyway. But DD1 wants an official diagnosis as she wants to KNOW, and if I knew better how to deal with meltdowns then maybe I wouldn't have to worry about other DDs' safety (and my own) when those rare occasions happen that she wants to cause us harm.

@Mummytodo when DD had her ados assessment we didn't get the raw score as apparently it's meaningless on it's own as they have to adjust to take age and some other stuff I can't remember into account. Her report had a summary of the tasks and her responses, and how those differed from what would be expected of a neurotypical child her age.