Primary School Auties 10: Summer and beyond 2022

[LightTripper]

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

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
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

carrie I think you’re overthinking it. She maybe works in the field, has or knows a non-verbal child or something and is just making conversation. IMO the bond comment is just an opening line to make you feel good. I’m sure you don’t stand out as not ‘normal’.

@carriebradshawwithlessshoes I'd also find that a bit strange but yes I expect for she must have a professional or personal experience as it wouldn't be noticeable otherwise.

DD is currently on the waiting list for SEN school, since May (I say school, it's age 2 to age 8), and we just got told it might be as soon as October (we were expecting year end). Would love this to happen to have her 5 days in the same place - some stability for her (and to be honest also a lot easier logistically for us). Only downside is that they cant accommodate a lunch nap anymore so we need to phase that out before she goes. I think she can manage without it, but her night sleep is so awful that we usually let her have a lunch nap just to get some rest somewhere. But should have an appointment re melatonin in the next few weeks, so hopefully that ties in timing wise and we can aim to lose the lunch nap and fingers crossed get her more night sleep....

Starting a parents course on Hanen 'More than Words' tonight. Quite a commitment with 2.5hour sessions 10 times until November. Also not in English so will also serve as a language practice for me... Had a home visit from the therapist running it and already picked up a ton of tips so am tentatively hopeful. Also hoping to meet some other parents in a similar position, missing that support system right now.

This weekend we go to a family wedding - they are expecting DDs to be flower girls. DD1 will definitely not want stay in the ceremony for more than a few minutes so hoping it's an informal vibe and nobody minds too much. Last wedding a few months back was so stressful and I basically vowed never to take the kids to another one!

Thanks both… well she’s come over to chat again and I tried to find out what she does for a living, I wouldn’t normally but I’m now interested. She’s a legal secretary! Hmm…! Open you are right possibly about the overthinking. I’m v defensive when it comes to DS.

Carrie I do understand where you're coming from. I remember having a lovely day out with DS a few years ago at Drayton Manor. We shared a carriage with another Mum and son on a Thomas train ride. DS had been chewing the neck of his top but otherwise to me was presenting 'normally'. When she asked on DS was autistic I did feel a bit like someone had burst my bubble. It felt very intrusive. I would not ask someone something like that myself but I think that it came from a good place.

Ahna fingers crossed that the school placement is soon. It seems a shame that they can't accommodate a nap. My DS is 9 but naps are still quite frequent (although never at school).

Hi there @StarDog and @ahna68 (and everyone else!!)

Sorry I've been a bit absent. Holiday and then house disaster but we're all well otherwise!

It's funny on people asking about autism - I always kind of want to myself if I'm out and about and spot someone on the spectrum but I've decided there is really no good way to do it so I never do. I'm always curious though and love to see kids out flapping away or whatever, it always brightens my day somehow! I think I genuinely just didn't notice any of that before I knew DD and started to learn about autism. All kids were just weird and inexplicable to me :) I do think I'd have quite mixed feelings if someone asked about DD unless they immediately made clear that they also had an autistic or ADHD kid (or niece/nephew etc) so were part of the "family" IYSWIM?

@ahna68 you asked about nannies: we already had a nanny when DD was diagnosed and she did ask for a pay increase, which we gave her. It felt a bit rough at the time but looking back I think it's reasonable: it was just more intense/full on being with DD than other children her age I think (less so now, but definitely when she was small). In London there is actually an agency that specialises in SEN nannies. I don't think it's so much that they need special qualifications but they do need to be really engaged and active. That agency actually told me there isn't much of a premium for SEN but I'm not sure if that's really right - the adverts we saw seemed to imply higher rates for SEN, but not much higher.

If there are parent groups near you that you can get involved in you may have better luck through that route (e.g. somebody may know someone who works in a nursery or as a school TA who would be interested in the work and has the appropriate skills and energy if you are able to pay a bit above market).

Hi. Sorry I haven’t posted, I haven’t even been reading lately to be honest so I’ll go back in a min and try and catch up. I must re download the app it’s so much easier to access.

I hope you’re all ok?

Not much to report here, ds is back to school Tuesday, thank the Lord Jesus Christ.

He’s very much like your ds open in that he won’t go anywhere anymore, as soon as we leave the house he’s crying to come home, how frustrating, he ruins it by constant whining and crying and he’s taken to laying down on the floor having a tantrum because he doesn’t want to walk, so we come home anyway as it’s too much drama, I’m absolutely sick of the attention he draws to us. He doesn’t even like going in the back garden anymore so it’s not been a great summer holiday here.

Those nutritional shakes I mentioned on my last post a few weeks ago, I got my dr to prescribe them in the end so ds takes one of those a day now and I’m not having to pay thankfully. I can’t remember if I mentioned how poor his eating was?

For at least the last 3 months he’s eating 4 weetabix for breakfast (dry, no milk) and nothing all day passes his lips other than water or juice, then just a satsuma, a brunch bar and a chocolate paediasure shake around 6 o clock, I have a calorie counting app on my phone I track his calories on and he’s only having about 700 calories a day. He’s looking so thin and boney but what can I do? He will not eat! He’s never ate meals really just grazes but he won’t even do that. The dietician won’t take him due to autism diagnosis and all that’s recommended is a shake a day for his nutrients but it’s not helping him losing all this weight.

Fuming! I’m dieting all these months and he’s losing weight quicker than me 🤣

only joking.

I’m up to 2 stone 9lb off now btw.

@danni0509 sounds tricky. Glad he's at least having the shakes.
It's all changing here and DS and I are both a bit up and down about it. I'm back tomorrow, him on Mon, and he's upset about his class changing and timetable being different, and me being at work again. And I know what he means. I'm going to miss our holiday routine and him so much, he's been so chilled out all summer, the only yesterday and today starting getting overwhelmed again because of his anxiety about change. Just feel like I'm walking on eggshells again and not looking forward to any of it right now.
Good luck to all the DC going back soon. It's only 7 weeks until half term (DS made me count them!)

Nearly there Danni! Well done on the weight loss. My DS doesn't drink enough and it's so tough having to just accept that.

Susan good luck with the return to work. Hope that you and DS refind your rythmn quickly.

We had a good outing to a country park this afternoon but when we got into the car to come home things went downhill fast. As we pulled into our drive, I said to the kids that must be our new neighbours. As we got out of the car DS yelled at me that I was a 'stupid arsehole'. Welcome to the neighbourhood!

DS's eating sounds a worry @danni0509 though at least there is some variety and some fruit in there. We visited a friend in summer whose son is similar with food and I'm sure he was getting NHS support for his eating despite being autistic and ADHD so that refusal to take him on sounds wrong to me - surely that's disability discrimination? He doesn't stop deserving access to a healthy diet just because he's wired differently? I know you have so many battles to fight but is it worth a letter to your MP? She was trying to feed him little bits of chocolate bar just to get some calories in him and he really wasn't showing much interest bless him! It is tricky.

I hope your DH is doing OK. That sounds so stressful and I totally agree with the others that you shouldn't blame yourself. The two of you just have so much to deal with, it's not surprising you are overloaded.

danni the weight loss does sound worrying. I can’t believe the dietitian won’t see him because he’s autistic. What does the GP say about that? Surely it’s against NICE guidelines.

What happens if you leave his favourite foods out, does he just ignore them? Can he have more than one shake? Can you add anything to the shake like peanut butter or cream or coconut oil, something that will add calories?

As for going out, we were advised to try places that he really likes. I think you have to steel yourself that you may not stay long and hope it’s a phase that passes soon. When we were at the seaside I told my ds that one day he’d realise how silly it was not to try ANYTHING there - we parked, walked along the pier and that was it 🤷🏻‍♀️

carrie when does ds start at the new school? I really hope it all works out for you.

Thank you Open I’ll keep you all posted of course! It’s Tuesday, both have inset days Monday. DS been a million times more chilled out on this hol. I’ve decided the answer is to move to the canaries 😂😂.

good luck to everyone else too!

My main worry is with logistics… both start at v similar times so I can’t drive both there to be on time or wait for DSs transport as DD would be late! Only me at home at that time. I wonder how others manage this?!

How far apart are they @carriebradshawwithlessshoes ? I'm sure there must be others with similar situations particularly at SEN schools where there will often be primary age siblings going to different schools. Hopefully that means there should be some flexibility on drop-off times?

Not sure Light they have not talked about a differentiated start time.

they are both in the same direction, DD and DS about 30 mins apart. Her first. I’m probably going to have to drop her super early and she can hang around which makes me a bit sad as all other mums still do see their kids into school and she won’t have me. On pick up I’ll have to get him then ask her to hang around school until I can get there. Unfortunately we are too far from home for her to walk herself.

light on another note I was going to ask you something from an old post you wrote when DD was very small. If it wasn’t you I’m sorry but I thought it was! I think you said DD wouldn’t ask for obvious things, like a drink. DS cannot ask verbally but I note doesn’t do much to to really ask. That’s not to say he’s not thirsty as when I produce a glass he pounces on me in desperation. I just wondered how you dealt with that? It’s something about DS I find quite odd. I sometimes wonder if it’s that he doesn’t recognise he’s thirsty until he sees the drink it if he doesn’t connect communication with getting what he wants ie if he somehow asks me he will get. Or if he has no clue how to ask, which is awful really isn’t it if he’s thirsty etc. I often think if I didn’t give him stuff like food and drink he would go all day without unless he was able to get it himself.

ignore if you aren’t the right poster!

Or if….

That was me and DD yes!! Really we just had to give her regular access to drinks and snacks, and ask her to check in her body if she needed the loo or a jumper. I think it's just not something her brain really focuses on or prioritises.

So I think with DS you're probably right that he doesn't feel thirsty until he sees the prompt of the drink - his brain is just wrapped up in something else.

I'm actually much the same even as an adult. I generally do these things by routines and habits rather than being very tuned in to what my body needs. It means if I miss a meal time I often don't realise it until I get to the next mealtime and then wonder why I'm suddenly ravenous.... or wonder why I'm feeling dizzy and then realise I haven't had a drink all day.

Thanks Light. It just bothers me in the context that wanting something such as sweets/ drink surely is the biggest incentive for a child like DS who has no interest in toys etc to speak. Without that I worry he never will.

@carriebradshawwithlessshoes My Dd is the same re food / water etc. If she sees something yummy in reach she will reach for it, but otherwise no indication. I think it’s their sense of ‘interoception’ or something - part of the sensory profile. It’s tough. I also think she has the same not being able to read when she’s tired. And a different sense, but she often doesn’t really respond to painful things - she could burn her feet on hot sunny tiles without reacting. That worries me too

@ahna68 i really relate to that. Ds seeks out hot things, in winter he will stand against a hot radiator all day and he loves sitting or even laying on the hot paving stones around the back of our house. He will even put his cheek against them on a hot day. If I’m cooking he will stand next to the cooker pressed against if. That said he will cry if he falls over or if the bath gets too hot because he adjusts the tap he will get out so there is a threshold but above what it should be, bizarrely he has poor tolerance to the cold tho. Hates it and shivers even in warm water. I took his wetsuit to the Canaries!

@carriebradshawwithlessshoes it’s all so complex isn’t it, that’s a great idea w the wetsuit though!

got back last night from weekend at family wedding. Such a stress! Very busy and hectic and involving a change of accommodation too. And a long drive making it hard for her to get her fix of moving / climbing. I really hate putting DD through that, feel like she’s going to be unsettled for days. 3 hour long meltdowns yesterday which is a lot for her. But with family it’s hard not to go
to these things, just feels a bit unfair to her. Breaks my heart to see her so stressed.

I hope things went well for all those going back today. For us it went better than expected, pretty much as we left last term - a period of not wanting to go into class then stayed about an hour.

That’s great Open, they have all been off for so long!! So great he picked up as before.

Next up for us tomorrow.

I have to say I’m worried. Not about DS going, he will be fine, but something else. I know everyone is tied up at the moment but just wanted to say this so someone can either tell me it’s a well founded worry or I’m being stupid. What I’m worried about is that as a SS they are going to look at DS and assess him or whatever they do and then tell me something terrible about his future like oh, you need to accept he will never do x, y , z or imply that (like speak or other stuff.)

I’ve had experience of this before and it’s been so upsetting. I took him to a SALT when he was very young and she uptipped this bucket of beads and other crap and DS sat down and smiled at her and started messing with it. she watched him for a minute or two and then said he was showing no JA and accordingly in her view his prognosis was very bleak and he would always be on a different pathway. I had expected her to be helpful or constructive and it wasn’t like DS had done anything really awful or bizarre yet she was quick to give that opinion as a professional.

I just worry this SS will start saying stuff like this too rather than trying to identify the areas where DS needs help and helping him. Does that make sense?! I’m not deluded but he does have so many positives, is bright etc yet any positivity about him is just brought down by comments like that. Either expressly or impliedly. There’s been a few implicit ones already, when talking to the school nurse about DSs unreliability re the toilet he said (having never met DS) that it would be better for him if he could use the toilet as an adult. Well of course it would but we are a long way from that yet, for all DSs difficulties I don’t think about him as a person who will be in a pull up at 40…

Open is going to tell me I’m overthinking again…!

Anyway we have had no choice but to do this so I really hope I’m wrong.

DS had a good morning apparently then struggled a bit this afternoon, not surprised with all the changes. He was v jumpy at bedtime, doing lots of maths quickly. When he was asleep, he was starting as w3ll, I had that as a child too qnd sometimes still do, when you're half asleep and jolt awake. He's not been so anxious all summer. It's so difficult for him to socialise all day etc.
@carriebradshawwithlessshoes most special schools want each child yo fulfil their potential, and they have much more experience too. Good luck for tomorrow, hope it all goes well.