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

@Ahna65 that is so frustrating re the respite place. @Open hope that you're all recovered.

Very rocky time here. School reported big improvements with the meds - less distracted, engaging more with peers and trying to be more independent. However, on school days, by the time DS got home the meds were wearing off and he was explosive. It all came to a head on Tuesday evening when a neighbour phoned the police as she feared that DS had hurt me. 4 police officers in the living room at 8pm is not how we normally roll. However, it has triggered some more support

• spoke to CAMHS psychiatrist and LD nurse and have changed meds.
• the therapeutic social worker we work with is arranging for a colleague to offer training to school. I am still rather disappointed with school. On Tuesday the secondary kids who had worked hard on their reading got a Macdonalds as a reward but DS didn't.
• OnePoint called me today and they are going to have another go at getting DS a Disabilities social worker.

Oh @dimples76 , what a week for you. How are you doing in yourself?? I'm in awe of you, honestly. I talk about respite and you just get none at all, at least DH and I can take things in turns.

That seems horrendous about the McDs reward - seriously bad from the school..

@openupmyeagereyes that still sounds fairly organised for Xmas in my book! Still got time :-)

Yeah, I'm still deflated about the respite and the fact they have given no further explanation since we responded to their one line email. But then I know respite is not a 'given' at all.

I have a kinda feeling of dread around Xmas this year, think I'm going to find it hard. Not really got any plans at all because it felt too hard really.

Oh dimples that does sound stressful. What did the police say to you and ds. Was ds shocked? I hope they handled it sensitively. Awful about the McDonald’s reward, that’s the sort of thing you don’t expect in a SS. It’s such a MS thing to do.

Ahna what do you think will be hard - that dd won’t cope?

@openupmyeagereyes Yes we end up just really planning nothing at all because of that. I mean we will try and make it a special day for DD2 but just the 4 of us and I guess it doesn't really feel like Xmas, a weird anticlimax and sadness. But Xmas throws up weird emotions / expectations for a lot of people and families I know - so I shouldnt put that down to a SEN parenting issue (I've had other rubbbish Xmasses pre kids for one reason or another). I just find it a hard time of year somehow.

Thank you both.

Ahna I love Christmas but I always get emotional this time of year - especially thinking about loved ones who are no longer with us. My Mum and I were agreeing that we both enjoy the anticipation more than the reality. I hope given that it sounds like you have very realistic and low expectations that you are able to enjoy some special moments. I don't know if your girls would enjoy it but I can recommend That Christmas on Netflix.

Open he mostly presented excited by the police's arrival, eg asking to see their cars etc. The rage had subsided before their arrival so they met my little charmer. I am sure that there was a lot more going on under the surface. I think he was rather thrown by my reaction as I just felt numb/ humiliated and so was uncharacteristically quiet. Every time I think about the Macdonalds rewards it makes me angry.

The LD nurse has just dropped off the new prescription so fingers crossed this has better outcomes ...

I also have my postponed viva next week - joy of joys.

Ahna I would not say that I am coping very well. Just putting one foot in front of the other and hoping for the best

dimples when is your viva? Wishing you the best of luck. I hope things have been better with ds.

How did you get on with that brain brilliance cookbook? I was listening to the author on the Liz Earle podcast the other day.

Ahna I’m sure some things will become easier with time, including Christmas. I hope you can find some balance for you all to enjoy it in different ways.

Thanks Open, the viva is tomorrow!

DS refused to take the supplements I bought and I can't say that I have been that successful in reducing UPF, especially crisps and crackers. However, DD does take the supplements and after suffering on and off with constipation in the past appears to be much better.

Been a bit tricky organising new meds but I am going to collect them this afternoon. I think I will wait for Thursday for initial dose though in case DS experiences any significant side effects.

In good news DS's anger and aggressive levels have subsided to almost normal (for him!)

When do your DC break up? Friday like us? And what have you got them? I have struggled with DS's presents this year and worry that he might find them a bit too educational, eg telescope, bingo set

dimples presents this year has been difficult as the things ds wants are invariably discontinued so hard to find and expensive when you do. He’s playing with toys less and less.

Hi everyone!
@dimples76 hope the viva went well!
We are good, I have finally got most stuff done for Xmas! Winter Solstice today so the darkest part of the year is done for another year! Starting to look towards 2025 and new plans, new ideas, etc. It's so hard for me with this as I love to hypothesise new ideas etc but DS and DH get anxious around my random ideas so have started journalling instead!
Tell me about it with gifts! All DS wants are these discontinued battle tops from Japan! I have bought some and also lots of books! Found some nice bits for DH too. Going to pop out later to the festive market and there's a new games shop in town to check out! Might try and see the big tree in town too. I also want some greenery for inside...
I hope that the quietness of the thread means that everyone is doing OK, and that we all have a lovely festive season!

@LydiaWickhamsBonnet hope that the shopping trip was successful.

My viva went well. Some minor corrections to do in the New Year and it will be all done.

DS is being very difficult. I think perhaps that he is trying to control me (and to a lesser extent DD) more because he has so little scope to control things at school compared to his old school. But I am not sure what to do about that. I am trying to connect with him as much as possible but the name calling, threats of violence and hitting do make it hard. He is refusing to take the new ADHD meds.

We went to see Moana 2 yesterday which DS and I enjoyed but DD got bored and started throwing herself around the cinema.

Mom of a boy with Agenesis of the corpus collosum and autism , he's 5 , hi everyone!

Hi @Accbabymom1994 welcome!
Hooray @dimples76 for the viva. Hope things settle down a bit soon.

Welcome Accbabymom1994. How is ds doing?

dimples massive congrats re. viva.

Elizabeth thank goodness for eBay!

We are doing well and illness free, thankfully. Have been out for a few Christmas events, which has been lovely. Ds getting v excited for Christmas Day.

He is doing well, in education he is really behind, he is year 1 but has learnt only 3 letters , have to stay in routine otherwise he has meltdowns which last the whole day, he can't take crowds or crowded places, he needs attention most of the time, but he's the most beautiful person so loving and he's so straightforward, holidays are hard too that's y I try to get him into clubs.

Hi @Accbabymom1994 , I don’t know hardly anything about ACC but from your recent post a lot of familiar struggles. Is he in MS?

@dimples76 congrats on the viva!! Long time coming for you , big achievement

wishing everyone a happy Xmas. Had a truly horrendous night - up until 430. And an Egg on my head from DD whacking me with her elbow, not deliberate more just totally wild behaviour. Sleep is just horrendous of late. Pushing for medication in January, not sure what they plan to try first. They wanted to do some ENT tests first (not hearing stuff but like sensory processing?)

things feel probably the hardest they’ve felt over here, just trying to be gentle to ourselves and the DDs and have a calm few days. Off work until January at least.

Hi what is MS?

Oh sorry , mainstream school

Yes , he is going to mainstream too

Thank you for the congratulations! After 7 years to get here it does feel something of a miracle.

@Ahna hope that sleep improves soon and that you get meds sorted.

Merry Christmas to you all

Merry Christmas everyone! Ridiculously early start here 😆
I hope you all have a joyous day.

Merry Christmas! DS loves his gifts and DH bought me some lovely things. Hope you all have a restful day!

Wishing everyone a happy new year. I’m very grateful for this thread and all of you.

Happy New Year all! I too am grateful for this thread, it feels like such a long time since we started chatting and supporting each other. Long may it continue! We are back home after a few days away where we all had that coughing virus that's going round but aside from that, all good. All the decs down today! I'm doing Dry Jan so got lots of alcohol free drinks in!

Happy New Year to you all and thank you for all the support. Christmas itself was great but afterwards not so much. DC are back to school tomorrow. Yesterday evening I was reminding DS about imminent school return and he asked me why I hadn't said 'boo hoo hoo' (as I often do when hols are drawing to a close). I wonder why DS?!

Have had zero success with getting DS to take the new ADHD meds.

Happy new year everyone. Hope holiday periods were enjoyable.

We’re struggling quite a lot, particularly DH, which has an impact more generally on us all. There’s a big link to the sleep deprivation but i think also the relentlessness of the late evenings etc. Trying to figure out how we might get more support or help, and clashing between us around that (whilst I was open to the respite for various reasons including it will be the place she goes for daycare, I’m not open to residential care at this age and stage and I also don’t think we are ‘at that point’. DH disagrees). I am trying to balance things as I do worry about DH having a breakdown or similar, but at the same time I can’t take on all the evenings and nights myself as then I’d burn out. He’s resisting my idea of doing a hotel night a week for time off -whenever I suggest this type of thing he says that I’m labelling him as ‘the problem’ when it’s all linked to DD. It’s pretty depressing and circular. Not sure what to do really.

echoing others re appreciation for the thread!!