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Thread 14 - Autism and any other SEN

503 replies

dimples76 · 15/08/2024 18:56

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

OP posts:
Ahna65 · 07/04/2025 17:52

Hi all haven’t posted in a while, been keeping up on news but couldn’t gather thoughts to reply

we’ve had a rough few weeks with DD, just so much crying / head banging. She did have a vomiting 24 hour thing so I sort of Hope it was the lead up to that but not convinced. She’s just had a tough phase.

Latest on the appts stuff is they want to try her on bumetanide - a diuretic that they say can have positive impacts on autistic children. I’m still not clear on the exact use case, studies seem to focus on behaviour more than speech, but have an appointment again to learn more. They said the recent , short but more high tech EEG had indicated abnormal activity, which is the basis for their recommendation.

in other pretty crap news positive preg test for me this morning. Feel really stupid for being in this situ (also so avoidable given that we are truly hardly ever doing the deed..). Haven’t told anyone irl, busy head today. Stupid!

Hope all ok.

dimples76 · 07/04/2025 18:00

Oh @Ahna65 that sounds like a lot on your plate. Take care

I have not heard of those meds

OP posts:
openupmyeagereyes · 07/04/2025 18:05

Oh Ahna, lots on your plate as dimples said. Have you told dh? Flowers

openupmyeagereyes · 07/04/2025 18:08

First week of Easter hols here. We saw the Minecraft movie at the weekend. It was pretty poor but fun and ds enjoyed it which is what counts. We haven’t done anything today but will go swimming tomorrow.

The weather is so nice; if only I could get ds out more!

dimples76 · 07/04/2025 18:19

My two don't break up for the hols until Friday. You can definitely tell that it's the end of term.

Playdate at the park yesterday went better than I had anticipated.

OP posts:
Ahna65 · 07/04/2025 18:20

Ah is it Easter there, I didn't realise. Our easter hols are shorter and later. We had been planning to go away as DH's mum wanted to have a big family gathering thing, but we have decided to opt out, or at least that DD1 and me stay home. DD2 will love it w all the chaos and kids but we have sort of decided not to travel with DD1 for the forseeable, too much stress for all

@openupmyeagereyes not yet, he's not back from work. I will tell him though, but in person.

openupmyeagereyes · 07/04/2025 19:53

That’s great dimples Smile

Ahna65 · 08/04/2025 11:46

Yes that’s great dimples. Sleepover sounded harder to manage but wow amazing for it to be even on the table I can’t imagine DD getting to that point socially. DD2 is pushing for more play dates but wants them all at her friend’s houses as she’s scared that Dd1 will hurt her friends (she had a bad head bang from her a couple weeks back and it’s left her upset sadly).

carriebradshawwithlessshoes · 08/04/2025 14:13

Def sounds like you have a lot to cope with Ahna, take care of yourself. Re the drug you mention tho for DD1, I’d see it as a positive in that it may help??? Interested to know your experiences when she tries it. I do find it hugely frustrating and confusing and I raised this at length before (even did a separate thread) that the nhs say abnormal EEGs are a typical asd thing. They are not be be treated. As DSs consultant says, ‘treat the child not the eeg.’ Yet clearly other jurisdictions and private medics disagree. Both views can’t be right, surely?!

dimples76 · 08/04/2025 16:17

How are you feeling today @Ahna65?

Well after the positivity of Sunday's outing I got a message from school today that DS has been given a lunchtime detention for asking someone else to hit another child (his friend from the playdate). I am not sure how a lunchtime detention tomorrow is going to help. It's way too long after the event and DS needs to move at lunchtimes to stay regulated (he normally goes to a dance class)....

OP posts:
carriebradshawwithlessshoes · 08/04/2025 16:45

I agree @dimples76 . They do carry on very like a nt school don’t they? Which I guess is good in that they believe DS has the cognition to understand what they are doing and why?!

openupmyeagereyes · 08/04/2025 16:56

Yes, I agree. V NT school thing to do.

dimples76 · 08/04/2025 19:35

Unfortunately I think it's a one size fits all punishment rather than focused on DS's competencies. He is in the weakest ability class of the four classes in his year. They changed the discipline policy recently and I disagreed with it when I read it but did not actually do anything about it.

OP posts:
Ahna65 · 09/04/2025 08:54

@carriebradshawwithlessshoes i didn’t realise that that was the NHs line on EEGs, but yeah I agree, I’m in favour of treating/targeting that esp since it’s the only test that has flagged anything abnormal. Will keep you updated! The studies are interesting but too technical for me to make much sense.

@dimples76 agree w the others what a strange thing to have detention. Must have been thought out but seems so odd for a SEN school? Was he upset by the prospect?

im alright, weary. DH is in a rose coloured specs sort of mood and seems to think a 3rd child is a good idea - I am not of this view. He doesn’t seem to agree with me that there’s a high risk of dealing with ASD again, but I guess a google would help him see the correlation there. There’s just no way of knowing either way is there. I just think we have more than enough on our plate and although it would be nice for DD2, it would be a negative for dd1 too

openupmyeagereyes · 09/04/2025 09:27

Ahna not that I know you of course but I’m surprised by your dh as I seem to remember he was at breaking point with sleep and everything not that long ago? I guess things are very different when a baby is no longer hypothetical. I hope you can both work it out. Yes, possibly higher risk of autism but maybe that’s more if you can identify autistic traits in family members that you’d never noticed before rather than if there genuinely are none?

Ahna65 · 09/04/2025 09:49

@openupmyeagereyes 100% and I keep reminding him of this… he has selective memory

I don’t know. I think we have seen some autistic traits on his side but nothing strong so hard to know really. In the meantime there’s been a lot of kids on his side from
his siblings with nothing implying ND yet (although they are still young). I’m not sure what the correlation is for regressive autism or if that’s seen as more anomaly. But still, surely a significant risk

dimples76 · 13/04/2025 17:43

How are you @Ahna65? I hope that you and DH have had more of a chance to talk.

@Carrie and @Ahna65 have you seen any difference yet with the meds?

I took DS to a party of a friend from school today. He was one of only 3 guests and he really enjoyed it. They were a lovely family and it was nice to see him playing with other kids. A good start to the hols here ...

OP posts:
Ahna65 · 13/04/2025 17:57

@dimples76 that’s really great re the party, so glad to hear.

im alright thanks, quite confused. DH is def leaning in a more positive direction than me (although defers to me) but I’m struggling to get my head around it really. Worried il regret whatever choice I make and not sure how to make it suppose. Def would not have planned this but it does feel different I guess when it’s happened. I dunno - going to doctor this week just to hear about timing for options etc. Have a call with the consultant we’ve been seeing to hear his take on genetics / likelihood of severe needs.

no behavioural impact yet, just more weeing and have to keep her drinking. Possibly noticed restless legs in the evening, may ask if it’s ok to mix w magnesium. Had a really bad night of sleep but likely unrelated.

dimples76 · 15/04/2025 07:19

@Ahna65 I think getting more information is the best that you can do right now. It must be hard when you and DH's views are so different right now. Take care

After my cheerful post on Sunday it all went a bit downhill. DS was at his SEN group in the morning, DD and I had a great time snd DS came out looking happy but in the afternoon it all went to shit. Hopefully today will be better .....We are going to RDA riding lesson this morning and the cinema this afternoon.

OP posts:
Ahna65 · 25/04/2025 09:05

@dimples76 how's things been since your last post? More good than bad I hope. How was the riding? Dont think I knew you did that, I've read about some DCs responding well to horses. DD has no interest at all in animals atm.

We've had a tough week or so with DD. I'm wondering if it's side effects as she adjusts to the medication but just so so difficult - huge meltdowns, lots of self injuring head banging etc, keeps getting sent home from daycare because they just dont know what to do with her really. I was also on my own w her over the long weekend which was pretty testing tbh (but then I feel guilty that I find it difficult too).

I'm still deep in confusion re decision making. I've managed to talk to genetic doctor, have a general chat with a counsellor type person (2 hours..), had an early scan - was hoping all of this information would help lead me somewhere but to be honest not really. On the risk of recurrence they really can't say much, it's so poorly understood, but seems to be somewhere around 20% (some think less as you can rule out certain genes we've been tested against; but other figures say higher if existing DC is female as well as severely impacted). I think what I'm really grappling with is that I just can't imagine having another DC like DD, I don't think I / we could cope. And although it's a minority chance, I think probably you have to make peace with that possiblity / be open to it if you are to move forward? Not sure if that makes sense, and I really hope I'm not offending anyone I know it's a difficult and loaded topic, and because of that I also feel unable to talk to many people irl. I have kind of decided I want to move ahead and decide this weekend.

dimples76 · 25/04/2025 17:17

Ahna, it must be so tough. I bumped into a foster carer I know at the supermarket this week with her family. She asked if I was thinking of adopting again and explained that the gorgeous baby she had with her was waiting for a family. There's absolutely no way that I could take on another child given DS's needs and behaviours but I would be lying if I said that there was not a big part of me that wanted to scoop the baby up.

I hope that you are able to make a decision this weekend and move forward positively. I really feel for you.

Another bumpy week here but the last 2 days have been fab. We went to Drayton Manor theme park and had a great time. DS was on great form for the most part. He loves rollercoasters/white knuckle rides. We did have rather a sad moment in the middle of the night.

Me to DS: DS, I love you
DS: I don't love you
Me: I know
DS: You are a fat loser
Currently one hour in to a 3 hour train journey home. I think me and the rest of the occupants of Coach D are losing the will to live!

OP posts:
Accbabymom1994 · 25/04/2025 17:47

dimples76 · 25/04/2025 17:17

Ahna, it must be so tough. I bumped into a foster carer I know at the supermarket this week with her family. She asked if I was thinking of adopting again and explained that the gorgeous baby she had with her was waiting for a family. There's absolutely no way that I could take on another child given DS's needs and behaviours but I would be lying if I said that there was not a big part of me that wanted to scoop the baby up.

I hope that you are able to make a decision this weekend and move forward positively. I really feel for you.

Another bumpy week here but the last 2 days have been fab. We went to Drayton Manor theme park and had a great time. DS was on great form for the most part. He loves rollercoasters/white knuckle rides. We did have rather a sad moment in the middle of the night.

Me to DS: DS, I love you
DS: I don't love you
Me: I know
DS: You are a fat loser
Currently one hour in to a 3 hour train journey home. I think me and the rest of the occupants of Coach D are losing the will to live!

Omg , exactly what my son says whilst being overly loving at times, why do they become like that at nighttime?

dimples76 · 25/04/2025 19:38

Sorry to hear that @Accbabymom1994
Unfortunately DS is rarely loving or affectionate to me

OP posts:
openupmyeagereyes · 26/04/2025 14:50

dimples it must break your heart when he says things like that. You’re doing a great job Flowers

Ahna you’re certainly not offending me. You need to do what’s best for you and your family and anyone who disapproves of you taking time to consider this hasn’t walked a mile in your shoes.

dimples76 · 26/04/2025 19:01

Thanks @Open. It often feels like he despises me at the moment. Very mixed feelings about the hols coming to an end here.

OP posts: