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

Ahna sorry to hear that, it sounds tough. Are there any other respite places or might it be possible to secure a night time nanny - or would you be disturbed any way?

Your suggestion re the hotel seems sensible. I understand your DH's viewpoint to some extent though, eg I was very reluctant to take ADs as I thought that it's not me that's the problem and that you wouldn't tell someone in an abusive relationship with a man to medicate so that you can cope with it. However, they have helped me to manage so I am kind of open to anything that makes our lives a bit easier.

Happy new year and sorry to be slow on the update of late… just moving into temp accommodation whilst house is renovated, all v stressful and can’t find anything. I’m drowning in bloody boxes!

Ahna, meds for sleep are surely the first port of call? I know not easy to access but this could be a game changer for you surely? Would you not buy online if necessary… melatonin at any level (up to 5mg), phenergan (Danni used to recommend this, it’s available otc here). I know you may say these things aren’t ideal but from what you write it sounds like you are (understandably) at breaking point anyway. Sounds like trial and error couldn’t be any worse than the current situ? Obv if yon can get via an approved dr route in the NL all the better but otherwise I would be doing this without further thought.

Thanks @dimples76 yes I do see what you mean and I’m sure he would agree with that metaphor argument, but I guess I would counteract that we have a responsibility as parents etc. No other respite options atm. @carriebradshawwithlessshoes yes definitely pushing the medication search, have upcoming appointment about it. Not really keen to redo melatonin just because even the low dose last time really made things a lot worse at night and I had the sense it didn’t sit well with her. But generally very much open to trying medication - I think apart from melatonin would be reluctant to do so without doctor, but hopefully that comes soon. I am fearful though that any medication may not be the magic bullet we hope for - whenever I read about experiences for kids w sleep patterns closest to DD, seems to be that a variety of medications haven’t helped much. But absolutely keen to try!!

gah the boxes sounds stressful and hard but hopefully will be worth it soon. How is DS responding to the changes?

I’ve not got him yet… literally moved in an hour ago, going to get him off the bus and bring him back!!! God knows! I’ll let you know!

Ahna I think you need a two pronged approach. First doing whatever you need to do, (hopefully) short term, to get through this period - hotel, night nanny, babysitter - whatever you can afford. You and dh need to have a calm, non-emotive conversation about it, there’s no point assigning blame to anyone, you’re all on the same team. He knows that even if the issues stem from dd she’s not in control of it, nor at ‘fault’. Alongside this you push services harder for support, including meds to help sleep. Tell them how bad things are, even exaggerate if you need to. Find examples of what others are using, NL or elsewhere, and push them to let you trial. I’d also try a higher dose of melatonin, if it still doesn’t suit her you you can stop but IMO it’s worth a few days to see. Ds was prescribed 2mg slow release at 4yo (average weight/height).

Sorry, probably repeating myself and stating the obvious up there ⬆️

Have you spoken to private doctors?

Hi @openupmyeagereyes no not at all stating obvious. Appreciate the message. Fully agree w the 2 pronged and I had been thinking about it in these terms too!! I believe I’m being non emotive w DH but perhaps not so will indeed try again. On the melatonin, did you have to work up to that dose or just try it straight away? We don’t have slow release available atm but planning to ask.

we are seeing the equivalent of a private doctor yes, all under insurance here but definitely in contact w who we need to be (but agree on pushing them re timeframes etc)

No, we did not have to work up to it. I was nervous giving it to him but he was fine.

Your dh needs to be rational too, not just you. I totally get that sleep deprivation is awful, you still need him to work with you.

I really feel for you both.

Oh and it was an NHS paed that prescribed.

dimples has ds said why he won’t take the tablets?

carrie good luck with the temporary move and the house renovations.

A decent first day back for ds.

Good luck with the move and building works @carriebradshawwithlessshoes

@Open, it's a liquid and DS says that it tastes disgusting - it does have a very strong smell

Ah, not surprising then. Ds refused to take a gross liquid AB the year before last and we had to swap to a different one. Can they offer tablets or capsules? I’m sure you’ve asked.

How are you all?

Open the psychiatrist was singularly unhelpful re the meds - just said that he couldn't change the favour. I felt very patronised. However, we had a breakthrough this weekend. DS asked if I would buy him an add on for Minecraft. I said that I would if he took his meds - he then took it straight away with no fuss. He obviously doesn't like the taste but I think now he has had it he has overcome the fear and I think the smell is worse than the flavour. So he took it fine on Monday and yesterday. I bought him his favourite treat - Haagen Dazs Salted caramel ice cream as a reward. So it's a bit of an expensive route at the moment! I don't know if it is the meds (as it's rather early for them to have any effect) but DS has been on great form the last couple of days. Yesterday evening, DS, DD and I played vets together and it was lovely. Then DS got into bed with DD for her bedtime story and helped read it to her...unheard of! Whatever is behind it I am going to enjoy it whilst it lasts.

Carrie how are the building works going? How has DS adapted to the temporary accommodation?

Ahna how is DD's sleep at the moment? Were you and DH able to reach an agreement about rest/respite?

Liv how are things with you?

Hi hi, sorry to hear about being patronised @dimples76 that's always infuriating. Good that for now you have found a system though (and excellent taste in ice cream from DS! Although as you say, expensive taste...)

We haven't really moved forward, I was firm about not wanting to do the residential thing even part time, so we have shut that down. For now we just take it in turns to be in our bed with her and the other in a single bed in her room. The nights are about 50% OK 50% bad, so it's kinda doable but long term not really a great system.

Finding the cold weather tough, hard to be outside for long as DD wont wear hats or gloves but then at the same time she needs to be outside otherwise she's very disregulated. Roll on spring!

I can't remember, Ahna where did you get up to with the sleep meds? DS often refuses to even put a coat on before going out but will normally relent and put them on when he starts to feel cold. That said we went on a walk on Saturday in beautiful sunshine but 2 degrees and DS raged all the way around about being cold and wanting to go home. I get terrible cabin fever when I spend too long indoors so can totally relate.

@openupmyeagereyes we are still pending an appointment on the meds but I think it will be early March. They wanted to re-run some bloods and do some sort of auditive processing test (?) (not a hearing test but to do with how she processes stimuli)

We also need to work on a plan to get her back in her own bed, possibly with some sleep coach type advice I guess. The co sleeping is sort of OK just because it results in overall more sleep but I'm not really happy with it as a long term thing and it also excludes our ability to get respite if and when it does become available again.

dimples so glad you had a breakthrough with meds and that ds is having a more settled time - long may it last! How is school going, have they noticed a difference?

ahna I’m glad the nights are at least 50% ok. Re the co-sleeping, I’d try and work on whatever the most pressing issue is and do one thing at a time. I really hope things get easier for you soon.

Ds has been doing really well with the first couple of weeks back at school. He had his birthday at the weekend and is definitely in pre-teen mode now. His sleeping is trending better overall, still with blips but what feels like a tangible improvement generally.

I hope everyone else is doing ok.

Hi everyone. I fell off the thread for a while. Hope you are all doing well.

DD1, who's nearly 13 now, is doing a lot better. She's generally calmer and has few episodes of dysregulation. Just need to get her into better work habits! We now have to think about what she wants to do when she's older so we can plan exams, etc, if she takes them. It's a lot to work on.

Just when she's finding life a bit easier, DD3 is starting to struggle more (she's 8, and we think she is also autistic, with demand avoidance - but not PDA). She punched me the other day when I was removing her from attacking her big sister, so that was nice. This is about the age where we started seeing a lot more signs from DD1 that she was autistic so we're keeping an eye.

Great to hear everyone’s updates. We are ok, very disruptive re the move/ house but I’m trying to think no pain no gain.

i did start a separate thread as school have been a bit weird, interested to know any thoughts. I don’t really hear this from you all. What happens with us is we roll on and then every so often I feel (more than normal) annoyed at how little school are progressing DS, esp around communication. I then end up sending I admit a bit of a narky email asking that question which DH tells me is the wrong thing to do as it gets their backs up and they go on the defensive.

Anyway their latest response is that DS’s profile makes it very hard to advance him as he is so variable. Literally week to week. Some weeks he’s attentive and engaged (‘engagement’ is their key word) and they get a lot from him. Word approximations, signs etc and they are obviously very happy about that. However that then is followed for no obvious reason by him being totally disengaged, refusing/ unable to do anything. Often coupled with excessive sensory seeking. They even were making noises about is this a neurological brain blip which given his epilepsy diagnosis terrified me.

i had a neurology appt and discussed all of this. Long story short she said she thought it was all behavioural and v typical of an adhd profile. I then read dimples update and was thinking about whether we need to re visit adhd meds. Last time was an absolute disaster… he went beserk but the neurologist was quite cynical and told us we need to keep going till we find the right meds! Exhausting and circular I feel.

it annoys me re school because (a) this pattern really worries me from an epilepsy perspective and (b) I can’t do a thing about it. I don’t know why DS has that fluctuating profile so would hope it’s something they can try and work out (and try and resolve?!?!).

anyone else got this/ seen this. Do you think it’s odd? To be clear again, the change often has no obvious reason attached to it.

carrie do you notice this sort of varying presentation at home?

Yes. It poses less of an issue because I’m not trying to teach him anything but we see, for eg, him being very emotional/upset then quite chipper. Then maybe lots of mouthing one week and none the following. Or say a week where he can’t seem to sit still and then a week of him being very tired/ calm/ chilled.

I do find it odd as barring illness I know how I/DH/DD will be next week/ week after etc. with DS I often don’t know day to day.

Carrie DS is very changeable and can switch in the blink of an eye from (seemingly) calm and relaxed to raging and then to loving and gentle to hyperactive. I do not know from one moment to the next what mood he will be in. Most of the time it is hard to see what has triggered each change.

I know it's been a long running frustration for you that school do not seem very ambitious for him. With us school said that when DS was on original ADHD meds that he was trying to work more independently, less distracted and engaged more with his peers which all sounds wonderful but we had increased violence at home. This week on the new meds (although not expecting them to have kicked in) they said that he was more focused and wasn't shouting out (I wasn't aware that he was shouting out!)

It's tough trying to navigate the school relationship. I think that I was a bit too conflict avoidance when we had DS's annual review earlier this month. Partly because I did not have any suggestions or specific questions. It just frustrates me that they do not seem to accept that he is not 'fine at school' if he explodes when he gets home.

I wonder @dimples76 if adhd meds are/ can be the answer?

I asked his teacher in year 1 of the Sen school and she said in her opinion they did very little for children. Yet your DS seems to be benefitting?

I know on medikinet school reported DS to be aloof and detached and he actually fell asleep sat up in a cafe 😕. I recall Danni having nothing positive to say about the stimulant. Yet with strattera the non stimulant he went mental… I recall checking into a hotel at 3am one night when I had an important meeting the day after because he was literally tearing the house up.

i wonder if there really are so many variants with such different outcomes?

Unfortunately it seems to be a case of trial and error and yes they may not help at all. I was mainly hoping that they would reduce the dopamine hit seeking behaviour and lead to a more peaceful home....