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

I have used a few tools about body privacy and safeguarding. I think it’s an ongoing thing and unfortunately like everything else I don’t think DS specialist school can address it well.

DS is really vulnerable, if anyone told him to undress he probably would. He would walk up to a stranger and trust them. His concepts of privacy had to be taught in little chunks ans god knows how to handle puberty!

We have used picture books and videos, social stories about his body and others. He now knows what is private and says aloud quite often ‘my privacy’ when getting changed!

How was back-to-school today?

Pretty ok here though ds spent a lot of time out of class. He’s had a good afternoon though. He’s still adjusting to the clock change, should be more settled in a couple of days.

Ds went back to school today. He had a good first day back. He’s been halloweening this evening.

A book I’ve bought which I wanted to share as I think it’s quite good for explaining puberty, is, ‘The boys guide to growing up’ it was about £6.50 off Amazon. It arrived today and I’ve read a couple of chapters with ds this evening.

It has a section on sex which I’ll definitely skip for now, but there is lots of pictures regarding what will happen to their body during puberty, all the correct names too like penis and breasts (which I don’t use! ds calls it willy and boobs as that’s what I’ve always said to him) so least it’s explaining all the technical terms to him. It talks about the hormone testosterone and what it does to their body and how it will make them feel, there’s a section on keeping their body private etc, I feel for less than a tenner it’s well worth it. I’ll read a couple of pages a night to ds to drip feed it to him.

Thanks for the recommendation danni, will take a look.

Hi all, pottering along! DS enjoyed Halloween trick or treating but I think felt a bit flat after, but onwards! Bought some Xmas stuff today! I'm really not liking these long dark nights already though.

I will definitely check out that book, Danni. DS was asking me yesterday if he was 'growing a moustache'! Puberty and how babies are made is going to be a trickier topic here. The endocrinologist has advised that DS will probably need hormone therapy to start puberty so it will be planned and the surgeon who operated on DS's testes thought that DS will be sterile. DS has never expressed much interest in the topic. He just knows that he wasn't 'in my tummy'.

We had a good time at my Mum's Halloween tea party and trick or treating. We made a gingerbread haunted house which was fun if rather messy. ElizabethBennett'sBoots maybe we were having a post Halloween comedown yesterday too. It started well at the cinema with our local disability group. We watched the latest Trolls film - we didn't enjoy the songs as much as the first. But then my decision to try the University’s children's science fair appeared to be ill judged. Meltdown from DS leading to sharp exit. Our next stop (at DS's request) also failed. Then DS asked if we could have lunch in town - I knew that wouldn't work so he screamed at me all the way back to the car. I felt bad for DD.

Quieter day today but we are planning to go swimming. Such horrible weather here. DS is normally better when we spend more time outdoors but I have no chance of persuading him out in this.

DS is still asleep! It's been just over 12 hours. He is a good sleeper but not normally like this

Hope he’s awake now dimples, probably just tired after the end of school.

Halloween was quite successful here too. We have a fireworks display to go to on Saturday evening.

That does sound like a good book danni.

We had a good first week back after half term. Ds went in every day for full days. Now we need to work getting him back on transport.

Hope everyone else is doing ok?

liv that’s fantastic!

Very good @livpotter and hope it continues.

tough sleep week here. Spoke to someone with a similar situation whose child has been prescribed pipamperone - anyone familiar w this for sleep? Seems like an anti-psychotic from my googling. But keen to hear more since it’s been prescribed by a doctor here.

we viewed the respite place and it was a decent set up but I think viewing it made us realise we aren’t ready to take that step. Would feel guilty leaving her somewhere. Maybe in a few years if needed, good to have seen it I guess.

That's great Liv. Ahna that sounds like a sensible plan - good that you went to look.

We're coming to the end of half term hols which have mostly been positive. Toileting has taken a major downturn though. Yesterday we went to the firework display in my sister's village. DS loved it and kept giving me hugs (v unusual). Tomorrow we're going to the theatre to see Stick Man. I think that DS is more excited that we're travelling there by train than by going to the theatre.

We're also reaching the end of a two week half term. First week was fine but DD has been very unsettled this week, not sure why. We went to a local firework display tonight which we all enjoyed.
@dimples76 enjoy stickman, I was actually quite sad DD outgrew the Julia Donaldson and similar type shows over lockdown. She still likes theatre but is more into musicals now, which suits my tastes but not my wallet!

Jules Stickman is probably too young for DS really, but I think he will still enjoy it. I am taking him to see Six next year - we are only permitted to play Magic Musicals in the car.

I've kept the books and every now and again DS will love rereading those Julia Donaldson stories. I think they're so satisfying from a rhyme perspective and the morals are great.
We didn't go to the fireworks and then DS regretted it. So I've said we'll go next year. The weather has been awful here all day. He has a cinema trip tomorrow too so lots to look forward to. He's finally gone to bed after wanting to have a lie in this morning (lying in bed with his kindle and shouting down the time to us until 10.45!) So obv now is finding it hard to get to sleep sigh!! I've come down to watch TV, I'm rewatching SATC from the start. Such fab escapism!

Ahna glad you’ve seen the respite facility. Can you explore this drug with your GP?

dimples and Jules glad the break has gone well.

Elizabeth is there a fireworks option for tonight nearby?

We love reading the Julia Donaldson books periodically here too. Ds is looking forward to seeing Tabby McTat at Christmas.

We had a great time at the fireworks display. Looking forward to hot dogs and filled jacket potatoes later - not ds, obvs.

End of HT here too. It was ok tho I am sick to death of illness in our house. Do any of you take multi vits/ do you feel you eat well? I can honestly say I haven’t felt fully ‘well’ since the kids went back to school in sep. permanent sore throat, heavy head, tiredness, achiness, feeling hot/cold/shivery. DS then started with projectile diarrhoea which was fun. DD has had a sore throat for weeks. Then last mon I started with a vomiting bug. I’m just about ok now but feel washed out. DH saying there’s something wrong with me, no one gets this unwell so often! I’m so careful with hand washing too etc… any one else?!

when DS is not 100 pc he’s bloody hard work, just constant crying/ tantruming. The first few days of HT were hard, he’s been better since and on quite good form but I bet a pound to a penny he will start with something else as soon as he’s back in school.

no fireworks here, all cancelled due to torrential rain. We did manage a trip to Blackpool illuminations (geographically not the neck of the woods for many of you on here I don’t think). That was fun and definitely different although my head was spinning as we were walking round (not for once due to excessive Chardonnay consumption). Tbh relieved it’s work tmrw!!!!

carrie possibly you’re run down which makes you more susceptible. I’ve had a couple of colds since September but only felt ill for first day or so. Though I’ve had a headache this weekend so probably getting another one.

Sounds like you get a lot of fresh air out with ds but maybe stress from work and kids has an impact?

Take a multivitamin, try a turmeric tonic, try to eat more healthily if you don’t and cut back on alcohol would be my advice FWIW.

DH says I’m clinically depressed (about DS) and I would agree that I am which doesn’t help but is unresolvable really isn’t it (unless I ask for ADs which I have before but didn’t like the side effects.) I do think that has a massive impact.

in the interim will give that a whirl Open, thanks.

I won’t pretend I know what it’s like to have a NV child, except that it must be very hard so I can understand that.

Have you tried different ADs? What do you think about seeing a therapist? That might really help.

Have you had your bloods checked Carrie? Last time I was ill all the time my vitamin d levels were through the floor.

The gruffalo is still a big hit here dimples.

Sounds like the right decision for you Ahna. It's good you've seen it now though.

Thanks open.

Hope back to school goes well for everyone tomorrow.

Carrie I take sertraline. So does dh. (And ds… what a family! 🤣) I don’t have any side affects, nor does dh. Or ds for that matter.

You could always trial something.

I can’t say I’m any less depressed though, life is stressful with kids with disabilities.

Danni, thanks, I didn’t know you took ADs. Do you think it helps at all?

Liv, thanks… I’ve just got some vit D actually so will see how it goes. Great news btw about your DS and school, let us know re transport!

Open, yes re therapy but I don’t even know where to start in terms of who to look for. My depression does stem from the NV aspect specifically but then I often feel very conflicted, it’s hard to explain. I read a lot on this site (not this thread especially, often it’s AIBU) about ND verbal children who have a lot more challenges than DS and whose parents have to cope with a lot more than we do and I feel stupid for over egging the NV side of things when others seem to have it a lot worse. I also read from time to time on here stories from posters who just drop in things like ‘oh DS didn’t speak at all until he was 9/10’ and I feel this instant relief an hark back to our recent chat about things not being a race. I then read stories of people saying they have teenagers who are NV, one poster wrote about how she knows she will chat to her son one day but it won’t be in this life and I still can’t even contemplate that. Then the logical side of me thinks look, this is bloody ridiculous, DS isn’t daft, he’s not anti social, what am I missing, what am I doing wrong? What am I not seeing? It’s not rocket science. Is he missing some vital vitamin or supplement that I’ve just not yet stumbled on that will make his brain click into place? Have I not yet looked hard enough to find a SALT clever enough to unravel him? I’m such a problem solver I think there MUST be something I’ve not yet done that would click it all into place.

the whole conundrum of thoughts (as opposed to DS’s non verbal skills) actually is enough to drive anyone insane frankly!

I took them about 4 years ago, then stopped. (Was giving me insomnia hence the reason I stopped, that was sertraline)

I started back on them about 8 weeks ago, I have no insomnia this time around - thankfully. I probably haven’t been on them long enough to know if they’ll work but I don’t feel any different up to now.

Dh takes quite a hefty dose, has done for around 18 months, and he feels better than he did.

If you want a laugh Carrie, I’ll tell you a story.

The day I rang the dr for this lot of antidepressants, I’d had a full blown meltdown that weekend, crying, unable to cope with ds / life, just wanted to lay in bed and cry, I had been feeling depressed (for a while) but had taken a sudden turn for the worse, dh said phone the dr on the Monday morning and I agreed. Anyway my dr prescribed 50mg sertraline and I picked my prescription up.

Couple of days later (I vape, and this is very relevant to this story) I was sorting my kitchen cupboard out and found my bottles of nicotine that you add in to your vape liquid, it suddenly dawned on me I’d been vaping my juice with no nicotine for about a fortnight.

So my turn for the worse was actually an unknowing withdrawal of nicotine, and my drs now got me down as a total head case! 🤣

(I have decided to stay on the sertraline as it can only help)