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

Ah thanks for the good wishes you guys are good to remember! Arrived in Spain and I’m so grumpy ha I keep saying to DH I knew it was a bad idea (the journey was bad, and I hate seeing DD having meltdowns when I feel like it’s something unnecessary causing it -in this case unnecessary travel). But we are here and hopefully tomorrow sun and some pool time the girls will enjoy. I’m on the Rioja in the meantime. It’s come at a hard time as a trip, I’ve felt really close to burn out the last few weeks, combination of factors but I just feel a bit on the edge and I think this trip is an example of not necessarily putting our families best interests first. Yes it’s a close friend wedding but I think we do need to be a bit selfish sometimes when we know things don’t work easily for DCs etc.

need to catch up on messages here - @carriebradshawwithlessshoes we are a few years earlier but I do recognise what you say re lack of ‘progress’ , I feel like DD has the tiniest goals written out for her and often they aren’t even met. @dimples76 great re the emotional reg sessions going well and also good news re sabbatical!!

I find it hard to explain well about DS because there may be many thinking our lives are actually easier than theirs and I shouldn’t be moaning about ‘progress’ but I know what I want to see and I’m not seeing it. School say ‘given his presentation’ his progress to them is actually ok. Open I find I look at if backwards so to speak so can’t answer your question. I know the child I want DS to be and what I think he can be but how to amend the EHCP to get there I don’t know. I really hoped school would but it seems not. It’s like (different I know) a poster on here saying a while ago that a target for her child was to be toilet trained and she was so excited when he started a SS as she thought they would be passionate and knowledgeable about cracking it but actually they just accepted that a lot of the kids were in nappies and so just went with that. It’s that sort of mentality I see here… ‘he is what he is’ sort of thing. I explain it better in my other post, didn’t want to detract too much on here.

Well done Ahna hopefully some sunshine and water play will help you all feel better tomorrow. It is hard to say no to some of these things but I think that you're right you need to look after yourselves.

Carrie the thing that has always come through from your posts is that school don't seem to see your DS's potential and have low expectations for him. I really don't know how you overcome that.

They say they see the potential from videos with me or even when I’ve gone into school but he’s just not like that at school when I’m not there. Almost like he can’t generalise the skills away from me? So to that extent they don’t recognise them. Say he will do hours of OT and then 2 mins of work for example and they don’t know how to get past that. Or maybe I’m kidding myself about him, who knows…

Maybe the wrong place to ask but has anyone gone through cauldwell children for assessment? We have been waiting a really long time on the NHS and we are now at a point I think my daughter needs to go to Asd Sen school but we cannot apply for it until she has dx confirmed

Mummytodo we haven’t.

carrie in this situation I think you just have to look at what’s the next step for him and what can we do to get there. What hasn’t worked so far, what are the options, what else can we do? I don’t think looking at the child you want in the future is particularly helpful, at least not without some sort of road map. You need to try and plan the next 6-12 months, try to build foundational skills that are missing.

How much 1:1 time does he currently get at school?

Independent SALT and SIOT assessments may be helpful if you can find professionals that are supportive. When was he last assessed?

Is he still on ADHD meds?

And yes, you’d hope school would do this but they obviously have their set toolbox and ds isn’t responding. It’s not uncommon for parents to have to find the solutions themselves, unfortunately.

Carrie unfortunately, as Open says it does sound as though school don't have many ideas and just seemed resigned to your DS not being able to perform as well at school.

Mummytodo I haven't used them. I did consider it at one point but I think that they only look at Autism - I felt that was part of the mix. The NHS assessed for ADHD and learning disability too (all of which were diagnosed) but DS was on the waiting list for over 3 years. Have you looked into the Right to Choose (where private assessment can be paid for by NHS).

We haven't used them but we did use The Autism Service as the NHS wait time is 6 years where we live and the right to choose ones are now at 3 years here. They were absolutely fantastic from start to finish and were upfront and open about all costs, the whole process was done in 8 weeks.

Hi hi, hope everyone doing OK?

The trip abroad for wedding was relatively OK. DDs both enjoyed the swimming and DD2 just loves the whole novelty experience. The nanny babysitting during the wedding went OK too although I was pretty distracted / nervous. She stopped replying for nearly an hour on whatsapp (I think a meltdown was going on from what she said) which was a worry! I did say to DH though, next time I want to say 'no' to something I'm holding firm. The stress beforehand and also her adjustment back to normal was probably too much to justify the trip.

Otherwise DD is doing OK. Maybe I said before about her loving the trampoline - she loves it more if one of us (DH or me) is on with her as it makes her higher. In theory sweet and interactive but now it's really at the point where she has a huge meltdown if we won't join - even if not in the garden just nearby. It's becoming a real issue to be honest, not sure if anyone has ideas for improving that? I thought maybe we just try to make it less fun (not really jump) but that infuriates her too. Maybe just have to go cold turkey and see. IT's frustrating because she does have fun on it alone but seems to have forgotten.

Separately, had a horrible evening today as when I was in the garden with both DDs I then realised after a bit that DD1 had gone inside. THought that DH was around so assumed she had gone upstairs to him. After a bit I thought I should check, but then realised front door wide open and she had disappeared. PRetty far down the street - luckily just sitting down spinning a bike pedal but would have been SO easy for her to get knocked over or just be gone somewhere totally unknown and out of sight. Because she will rarely wear shoes a tracker system doesn't really work and I think we just need to absolutely watch like a hawk. I also messaged our street as an FYI with her photo which in hindsight I should have done earlier. Anyone else have experience with the escaping behaviour?

@SLS91 thank you I will look into this. I'm desperate to get the diagnosis for her. I feel like she's getting let down by everyone

@Ahna65 crikey that’s a coincidence as I was just coming in here to type about our horrendous holiday moment when DS absconded out of the cottage. I was helping DD with her homework and when I went back to the lounge DS had gone and the door was wide open. He does wear shoes but had dashed out in haste without them which was a godsend as he had only managed to get to the end of the street where there’s a park, hobbling on the gravel. So I sympathise but don’t know what to do. At your DDs age DS wouldn’t have even noticed the door he was so placid/ in his own world so she is ‘on it’ as a positive I guess! Normally in our house the front door is locked and it would be beyond DS to find/ turn the key but on hol we were obv in a different environment.

DS in a kind of similar vein has turned into a runner off which has been frustrating too. Even on the beach last year he would sit or run in and out of the water. Now he wants to run the whole length of the beach with me or DH in chase which just looks bloody ridiculous. For the first time this year I’ve realised he can actually out run me which is really worrying if this is his latest party trick.

re the trampoline no words of help really, DS is obsessed with it but is happy on his own. Will DD1 be happy for DD2 to join her? The other thing we do sometimes is throw other stuff in and DS likes trying to bounce so high it elevates the other things. That then is a game. So like a space hopper and the little plastic balls you get in a ball pool which are quite fun as he jumps on those and it’s a bit of further sensation…if he jumps on them at an angle they are like cannons going off (several over next doors hedge)… that may or may not be helpful 🙄

glad wedding was ok.

That must have been so scary for you both.

Ds has a history of trying to abscond when he’s dysregulated- both at school and at home. At home, doors and large windows are locked and keys out of reach. We don’t leave him outside by himself. When we go away we always rent a cottage that has an enclosed garden and are very vigilant with doors and windows, also when we go to others’ houses. You can talk to them in appropriate language or with social stories about the importance of staying safe. Obviously it’s not an overnight thing but hopefully over time it sinks in.

Re. the trampoline, agree with trying to make it more interesting. For a couple of summers I put a load of ball pond balls in ours. Throwing toys in and out. Try a sprinkler on a hot day.

Yes open throwing toys in and out or balls, we do that too

Hi all, we are fine, pottering along. DS is tired going back after half term but was bored in half term due to the rain etc so I can't win! Only a few more weeks and then we can think about summer hols. We went glamping for a few days last week which was tough as the bed was tiny, DS didn't get why the teenagers didn't want to hang out with him, and it rained a lot. Still, we had some nice days out.
Work is hard and stressy at the moment too. We have a new starter soon. And my review taking place the morning after my birthday...! It's our wedding anniversary soon too, 17 years! Crazy.
Hope everyone is OK.

Happy anniversary and happy birthday ElizabethBennett'sBoots. Hope that things settle down soon.

Carrie and Ahna how stressful re the running off. Fortunately not one of DS's habits although during half term when we were all out in the garden DS locked the front door then posted the keys through. Fortunately my sister was visiting with her boys and has a spare key to my house.

How are things with you Open?

I am finding DS very challenging at the moment. I am not sure if DS's behaviour is worse or if it is because I am more stressed (only 5 weeks til I am due to submit my thesis). DS keeps flooding the bathroom whenever I take my eyes off the ball and we now have a problem with the kitchen ceiling and the electrics. In addition, DS is obsessed with killing insects at the moment and then proudly displays his kills to me like a cat. He was even trying to kill bees at the weekend. I am really struggling to cope with this - what would you do when proudly presented with a squished fly?

@ElizabethBennetsBoots , congrats!!!

oh @carriebradshawwithlessshoes aorry you also had an escaping incident it’s so horrid…

@dimples76 thats a nightmare with the bathroom, just what you don’t need. Has DS been to emotional support group again?

we are having a s* couple of weeks. DD’s behaviour just very challenging and extreme meltdowns almost constantly through the evening. Her daycare says she’s been calmer there - I’m wondering if this is her way of sort of masking?? But doing it now when not before?! Finding it very hard to remain patient, the evening from 5-11ish just feels awful tbh. Hope it’s a phase…

Elizabeth congrats on birthday & anniversary. Hope review goes/went well.

dimples hope your ceiling and electrics are ok and thesis is going well.

Ahna I’m sorry things are so difficult. Is there anything that helps to regulate her in the evenings?

We’re muddling along. I can’t believe it’s nearly the longest day already.

I hope that the phase is over Ahna. That sounds exhausting.

It was DS's bday on Friday - how can he be 11?! We went to the pub for tea with my Mum, sisters and their families (12 of us including 5 autistic children/teens). Felt like an absolute recipe for disaster but amazingly it was a great success - greatly aided by the fact that we didn't have to wait long for food and everyone enjoyed it. DS declared it the best birthday ever!

Today, I finally heard back from Transport and surprise, surprise SEN team have not applied for DS (they wrote to me that they were doing it in February..) I have applied and also sent another complaint to SEN dept. Fortunately transport advised that it is still before their deadline so hopefully should not adversely affect us. Feels pretty stressful as a single parent with another child to be sure where I need to be for both of them. My Mum is normally v helpful but she is waiting for hip replacements.

dimples sorry, very belated birthday to your ds. I’m glad the celebrations were such a success.

Have you told him about the school move yet? How is he feeling about it?

We’re ok. Ds has decided he wants to call us mum & dad as it’s more grown up. He mostly forgets at the moment but it feels like it marks a change, he’s definitely growing up.

School still up and down. He’s also woken in the night a few times in the last week but, thankfully, gone back to sleep
after varying lengths of time.

Thanks Open I told DS about the new school in half term hols and he was pretty enthusiastic. Next Thursday we are going to an open evening for new starters then DS will go for 2 days in July.

Sadly electrical probs ongoing - if I open the fridge for more than a few seconds it trips. Thesis though is nearly done. I reckon 2-3 more weeks. I applied to do it in 2017 so it's hard to get my head around it coming to an end. Once thesis is submitted I have a massive to do list of house/car/child admin etc

Hope school and the night wakings improve

Hi everyone! DS calls us mum and dad too now when he remembers! They really are all growing up aren't they. I remember being with you all in this thread when we were having mainstream hell and going through tribunal for a special school, now it's almost the end of his 3rd year there! We find out which class etc he's in next year soon, eek.
I'm OK. Work is OK. Winding down a bit but soooo much to do before the holidays. I've been asked to be a apprentice assessor by my professional body too, which I was a bit hesitant due to time, but they'll pay for the course and then the assessments are online (and paid!) so I'm giving it a go!
Anyone else watching the football? DS is obsessed!

Elizabeth I just watched most of the England match. Pretty pants.

Well done scoring the assessor role, I hope it’s interesting.

dimples transition sounds good for the new school. I hope ds enjoys it. Getting the thesis in will be a massive achievement, especially considering all that’s happened since 2017.

@openupmyeagereyes , hope the sleep has improved a bit. Nice step toward calling mum and dad. Is your DS generally pretty chatty? Is speech 'normal'?

Hope the end of the thesis goes well @dimples76 can't remember when deadline is exactly but hopefully you'll feel a weight lifted (although attending to the rest of the admin list does not sound much fun). And hope the open evening goes well this week and you get a good vibe. Is DS still enthusiastic?

@ElizabethBennetsBoots assessor role sounds cool and a nice extra income stream too, well done.

I'm following the football a bit, looks like Eng vs NL at the weekend which will be interesting here, ha! My attention span to watch a whole match is pretty low though. Tiredness doesn't help does it.

@carriebradshawwithlessshoes hope you're doing OK. Saw you on a different thread re presentation differing and it does sound just hard and confusing. I don't recognise the same issues at such but I very much recognise the wish to find solutions. Maybe it's the lawyers in us?! Hope this week has been a good one so far.

Enjoying the sunnier weather! DD has been for some splashing / swims in the lakes in the dunes on some warmer evenings, which is lovely, and she's sort of swimming underwater from her lessons BUT I think she drinks a ton of water (she does the same in swimming pools, also non ideal but less risky than freshwater I guess). She was a bit sick in the night and I wonder if it's related. Impossible to stop her though without stopping going swimming.

We've had some more bad nights and lots of bad evenings. We are thinking of reconsidering the respite overnight here and there. Nothing has really changed since we looked last year other than I guess it feeling harder just because its more relentless and the impact on DD2 feeling a bit more pronounced. Also more familiar with the organisation that runs it now, through interactions during her daycare. Still a bit unsure, but thinking about it.

Meanwhile I have quite a bit of work travel that is a double edged sword. Kind of a break / re-energiser for me, but makes things harder on DH. Next week I'm away Mon-Fri which is the longest I've ever done from the DDs.

Sorry if I've missed anyone - hope everyone is good.