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

ElizabethBennett'sBoots we went to see Joseph and his technicolour dreamcoat on Saturday. My DS was transfixed by the narrator, who was very good looking. He wanted to wait for her at the stage door

@ElizabethBennetsBoots i always mean to ask then forget as I don’t think I was around in those days, why did you have to appeal re schools? Did mainstream say they could meet need? I always understand his ms school wasn’t v nice in which case I thought they would be glad to see him transfer (as DSs was.)

all good here aside from the work: hols struggle. Off to the south coast next Fri then me and DD are having a cheeky 2 days in Portugal end of month! First girly trip alone ever!! 🍹👗

Interesting conversation about puberty. Ds is starting to get pimples and his sweat smells sometimes. I need to get him a deodorant but I haven’t found a natural one I’m happy with so I’m not sure what to get.

Ds and I had a lovely afternoon out yesterday. Somewhere I’ve been wanting to take him for ages but have been nervous about. These things seem to be getting easier now he’s getting older which is really great.

Hope everyone is doing OK! We are having a quieter week this week after several trips out last week, today was mostly spent having a trampoline tournament and lots of board games! The weather is cooler too, which has really helped.

We’re good Elizabeth. Much cooler here too though no proper rain yet. The trampoline tournament sounds fun, did ds watch it at the olympics?

Ds had a play date yesterday that went quite well. We have another couple of meet ups this week too 🤞

We're on holiday in Scotland. Fairly successful so far but DS very up and down. As per usual expects everything to be on his terms. Every beach visit has ended in DS saying he wants to go home then rages if that demand is not fulfilled immediately. So today for example after an hour he said he was too cold but he wouldn't let me help him to change or do anything that would warm him up. DD was having a lovely play and didn't want to leave so I said we'll go in 15 mins. He then started threatening to pull my face off and drown me and threw sand at all of us. He also ignored me telling him not to drink sea water and now has diarrhoea.

My Mum is with us but is going home tomorrow for her melanoma treatment. Feeling a bit blue today and not really looking forward to the rest of the hols. It just all feels like a lot of work interspersed with brief moments of fun.

I think it’s hard dimples with just you. If DS is flipping his lid with another person you can turn take. I think you have to try your best, with all hols I think there is this great expectation but it’s just often hard. I remember my friend with 2 NT kids saying a couple of years ago she had enjoyed her holiday 30 pc of the time 🤣. Is there anything you can take to stall him? DS loves sweets and nibbles so an impromptu pull out of edible delights can string things out no end. I think everyone’s hols has ups and downs not just you!!! Would you go with one of your sibs and their families?

meant to say I think I missed your post saying your mum had cancer, is she ok? I hope so. Hopefully can be removed??? Found out MIL a few weeks ago has breast cancer, that’s a stress atm. I guess these things become more prevalent with age….

So sorry to hear about family members with cancer .

Holidays with young kids are just busman’s holidays aren’t they? For us, we can’t even eat out much because of ds’ restrictions. I hope ds can settle into things dimples.

Does he like holidays otherwise Open? Are you going away? Last year DD used to play with an autistic girl on hol in Spain. Mum said she would only eat chips which we agreed was not the worst thing but otherwise she enjoyed it. They can be busman’s holidays though yes, I agree.

Thanks Carrie and Open
My Mum had a mole removed a while ago and fortunately it is stage one but they're going to remove more tissue and also another mole. My Mum has lots of moles though and is v anxious about what else they find - it's v unlike her and she is wanting to talk a lot about end of life care and her will. I also feel guilty as she worries about how I will manage with DS without her.

It certainly does make it easier with 2 adults as earlier at the beach my Mum and I had agreed that she would take DS back to the cottage (4 mins walk) from the beach and DD and I would stay on. As it was DD was upset (after having sand thrown at her) so chose to go home.

You're right maybe 30% good times is a more realistic target! And to be fair apart from the 30 min each meltdown it has been a good day. I think for me us that it is hard to relax. I feel that I need to be hypervigilant to protect DD.

A group of my school friends are going to Spain this week and renting villa. We were invited. I did feel sad that there's no way I could make that work with DS.

Sorry to hear about your MIL Carrie. My Dad died of prostate cancer just before DS's 2nd bday when he was 68.

carrie ds loves going away and staying somewhere new. We usually rent a cottage or house. We go away later in the month.

Sorry to those of you with family members with cancer. Even if it's "just" stage 1 it's so stressful and upsetting.

I hope you all manage to get some enjoyable time on your holidays!

We're starting lessons slowly this week, to get back into things fully next week. Need to sit down with all the kids one by one and talk about their goals. I love looking back at the end of the year to see how we've done, and how things changed.

Ah indeed also sorry to hear about family members being unwell. A worry for all involved. I guess you do hear that cancer tends to be less aggressive in relatively older people. Hope it is swiftly treated.

Interesting on the holiday chat. Agree @dimples76 with the moments of joy type experience. 30% feels much more than realistic right now ha. @carriebradshawwithlessshoes Definitely hear from plenty of parents that that is indeed just holidays with young kids BUT to be honest it kinda infuriates me hearing this (not from you!!) - feels a bit gaslighty. Like yes I know it's hard with young kids for all but our situation makes it (I believe) loads harder. Although of course different experiences within SEN, and within NT. Yes @openupmyeagereyes recognisable re eating out. We tried one lunch and thought we would just ask for baguette for DD since bread is typically safe but of course it was the wrong sort of baguette etc etc... even if there is something she would eat she would only sit still whilst actively eating it so impossible really. Absolutely no interest in a screen anymore either which is quite limiting. @dimples76 recognise the experience of DD2 enjoying something and immediately having to stop because of DD1's impending meltdown - jsut hard having one family member dictate everything.

Our week is going OK ish. Same as usual really. Trying to explore via contacts / networks a few more options for people who could occasionally babysit or help out. I really want to build more of a network of support, but it's the availability that is limiting really rather than cost.

@carriebradshawwithlessshoes DD one on one trip sounds fun. I had a one on one day with DD2 at the weekend and it was great.

@Ahna65 i appreciate that this is a very unmumsnet thing to say but would you have more support if you were back here? Living near your mum? I know my life would be impossible without that, in terms of work, time out with DH etc. mostly from parental support but other family too. They are really the only people I trust with DS. It’s funny because all my friends and work colleagues for that matter have similar situations to me, it irritates me hugely when I read threads on here about ‘entitlement’ and children only being the responsibility of the parents because my parents worship the GC, far more than what they do me and they admit it!! Of course the benefit for us is that our lives are just so much easier. Quite a few of my friends parents have actually moved to live near to them when they have had kids because they have been so besotted with the GC!

im sure some GP aren’t like that, maybe it’s just coincidence that in my friend group/ work colleagues we have similar arrangements?? Some with Inlaws too though we don’t have that but tbh my own family are enough.

And yes @Ahna65 i think breast cancer can be less aggressive in the elderly so we are hoping that. Mil though doesn’t cope well with a cold so as she does need treatment she’s not coping with this at all. And I think outlook is very important in these circs.

hol sounds amazing Open, enjoy!! We are doing similar next week though it’s gone a bit cool here so the return of the sun would be nice!!

I agree. GP support can make a massive difference as long as the GP’s are fit enough to cope. We don’t get any, sadly, despite living close to my parents and not too far from the IL’s. Both are happy with us just bringing ds to see them periodically. A combination, I suppose, of us having children later in life and ds being ND and therefore harder work, though I do feel they could do more. I have friends whose parents are much more involved and it’s great for them.

@carriebradshawwithlessshoes my mum is extremely unhelpful. Critical of my parenting and has an attention span of about 5min with both DDs. She is retired for a few years now and financially very comfortably, could easily come to help a bit but has no interest in doing so. I can safely say being nearer her would sadly make my life a lot more stressful. It's a hugely difficult relationship and distance is one of the only things that helps a bit (I could write so many threads on this haha). Sorry to hear @openupmyeagereyes that you dont get much help, hard, especially when indeed you see others getting a ton of help.

MIL is pretty helpful but has a lot of grandkids and I'm conscious that the older she gets, that help gets less not more (of course!). Although in contrast to my mum she really loves her GP role. My brother is pretty helpful and I think would happily come over more with his wife to help here and there. Sounds also like DH's sister may move to the area soon and again, she would be helpful (although probably will have her own DCs before long).

Yes @carriebradshawwithlessshoes agree with outlook. Hope treatment goes well.

Oh I see. My parents are late 70s/ early 80s and still v much involved, driven I would say again by them. If I thought they were being less helpful than they could be I would tell them and possibly then end up NC which is very mumsnetty isn’t it! That’s just me though, I hate to think it’s all on their terms, though yes Ahna if she’s more of a hindrance I understand it’s something you wouldn’t want anyway!

changing subject it’s been an odd morning. Not sure where I go with this really! We have paid for DS to have some OT sessions with the OT he sees in school (those sessions have been at hers, I’ve been there.) Today was the review, just me and her. She said she would be frank DS is 2 totally different kids at school and out of it. Said he’s totally more calm, switched on etc out of school. Bouncing off the walls there. So tricky re her recommendations.

i said look, this can’t be unheard of! Why do you think he’s like this in school? She said she really didn’t know. I said do you think he’s unhappy there? She said no. Anxious? Again no. She said they are really trying Carrie but it’s hard to fathom! I said well do you think we should look at EOTAS. She said it wasn’t her professional position to say (but….). Made me think really are some kids just not meant for school? Oh I said in her experience would any other SSs be better? She said no, they are all v similar! So I’m puzzled really re what’s going to become of the whole school situ or what to do!

carrie there’s obviously something about school that doesn’t suit him. Either it is anxiety or he just finds it too much (or too little) from a sensory pov.

I think there are many out of the box kids that are just not suited to the school environment and expectations. Even in a SS there are routines & expectations. If you were to try and get an EOTAS package for ds what would you be looking to be included?

I do think there’s a 50/50 chance we’ll be in this position too. Ds made progress last year but there are still major obstacles.

I agree with all that Open. I don’t know how I would want an EOTAS package to look, atm I don’t really understand enough about it. Do you have a view of what would be included/ how it would look for DS? Playing devils advocate, for anyone who home schools, do you think this creates a longer term problem in that it doesn’t gear our DC up to life/ work etc where they are amongst others, not with their home comforts etc and the benefit of a calmer situ? I worry (generally) about doing things that may work now but may backfire in the long run…

I think that there will be even more options in the future, but even now there are many jobs that are far removed from your average office 9-5. For this type of kid, schooling with that norm in mind is probably a bit bonkers when you think about it. We do it because it’s what we all
did and because it’s expected.

do you know what it is about school that your DS struggles with?

And I’m sorry about your mum @Ahna65 . I know we don’t know each other in RL but I’ve read enough of what you write to see that you are a very good mum.

That sounds really hard @carriebradshawwithlessshoes and tbh I've been surprised here on other threads when you haven't had a ton of responses with similar experiences as it must be common you'd think. I mean you have masking where many ND kids are reacting very differently to e.g. school versus a safe space like home, and obv what you describe isn't masking but I guess the same re different presentations.

OT doesn't sound super helpful re suggestions but it is always good that someone speaks up frankly, so I'm glad she did that. I know nothing at all about EOTAS and would find it overwhelming to know where to start. HAve you ever spoken to a sort of SEN education consultant? We had a couple of calls with one here a while back, was in part just to guide us through the different options. But I've also seen threads around educational psychiarists doing full assessments. Wouldn't be something for DD I think but maybe for your DS.

I don't know what EOTAS entails, but we have always home educated, and I've got a great network of home ed friends, many of whom have ND children who have now finished and are working.

I think the world of work is so different these days. There are lots of work-from-home jobs, even traditional office jobs, and there are plenty of niche jobs that work well with special interests.

I see my main job as a home educator to develop my kids' learning skills, mental wellbeing, and resilience. If school is impacting on these areas for your child then it may be that learning at home is better in the long run. There are so many different avenues for home learning these days, and if you're in an area with a lot of other home educators (it's quite popular where I am) then there's a lot of support you can access from experienced people.