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

That sounds positive.

Hi and welcome

I'm pretty new to the thread - DS was diagnosed with autism a few weeks ago - but he is in Y2.

We found starting school was a difficult transition but the circumstances didn't help; it was 2021 and they didn't allow visits or anything (because Covid) and unfortunately he didn't know anyone, either (all his nursery friends were going elsewhere). However, we survived!

nightlighton do you have an EHCP?

@openupmyeagereyes perhaps a bit translation but it was definitely something they were sharing in the context of ‘we know this probably isn’t what you were hoping for’ etc.

yes @NameChange30 def possible to explore the different settings , I think we have visited most by now for various reasons or other in the last year, but I guess we need to really view with the question of not what would we hope for as parents but what suits her abilities at the moment (or in a year). Not sure re advice on it as such - we had in the chat yesterday the psychologist who works w her current place as well as her key worker. They know DD very well by now and also the SEN network in the region.

yes, Easter very early this year isn’t it!!

Completely random qu for a Weds for those who are around London or know it… we are thinking of a few days away over Easter but would drive down and (prob best for DS) stay somewhere ideally on the northern side in a hotel with reas facilities in an area where we could, if we have had a full day in the City, get something to eat/ potter around etc.

any thoughts? Obv need easy tube access to the centre.

When we came down recently for DS hospital trip which wasn’t a pleasure visit DH stayed in a premier inn somewhere I had better not mention and spent the whole time saying he thought he was going to be mugged or propositioned 🤣. Oh and the tube line seemed to randomly just not stop there one way so we spent the whole time either getting off at the next stop and then getting a cab or going backwards and forwards on different routes?! We chose well there….! 🤣🤣

thought it was worth an ask..

My dad lived in Hampstead for many years, it's on the northern line, there's Hampstead heath, and Hampstead itself is posh with nice cafes and shops. I haven't been there for a while now but I'm sure it hasn't changed much!

You could also consider Walthamstow, it's on the Victoria line and there's a lovely park. Not posh like Hampstead but very popular with young families.

Thank you!

Yes @carriebradshawwithlessshoes Hampstead is lovely!

Although you could also consider going further out and using the Thameslink train instead of tube. E.g. St Albans is 30 mins to Blackfriars (which is very central on the Thames for most the sights you'll want), or Harpenden also lovely one stop further - but you could probably get a much nicer hotel in that type of region maybe with swimming pool etc whatever you are looking for (and more likely to have parking I'd think). And if you had the car too there's some lovely smaller villages around that region - for a walk or a pub lunch or whatever.

It would rely on no train strikes but to be honest that's touch and go with the tube too!

Great ideas, thank you!!

I took DS for his eye test - with the eye drops - this afternoon. It was awful. One thing I wish I'd known beforehand: to ask for two people to administer the eye drops at the same time. After the first one he was so distressed it took ages and was an absolute nightmare to do the second one. Tried to calm him down and persuade him for at least 20 minutes and eventually gave up and pinned him down while he screamed
It's done now so we can get him some glasses at last. He needs a strong prescription so of course I feel terrible for not getting his eyes tested before.

That sounds traumatic @NameChange30 , although for a good cause. It’s horrible when force is needed but is sometimes is for good reasons like this. We are not quite at that stage yet but I wonder how they do eye tests for NV children , must be a challenge. Something to look into down the line perhaps..

enjoy the long weekend everyone, one more work day here.

NameChange30 that does sound stressful but at least it’s done.

We’re on Easter holidays now. Ds has had a pretty good term, particularly this half term. Hopefully things will continue to improve.

Ahna that must have been a tough conversation with school. I hope that you find the right provision for her.

Namechange well done on getting through that ordeal. I hope that your DC is better at wearing glasses than my boy. We are overdue a check up but it feels pretty pointless as he refuses to wear his glasses.

Open hope that the improvements with school continue. Well done to you and your DS - you have come so far.

Good luck with the London trip Carrie.

My 2 have broken up for the hols today. I am completely worn out as his DS. When I took him to OT today he fell asleep in the car then just wanted to lie down in the therapy room.

I have been so busy with my thesis that I haven't planned anything for the hols. The kids are saying what are we doing tomorrow...neither are good at going with the flow and I am normally a planner. I need to do some work tomorrow too. Hoping that I can persuade them to have a pj day while I re-group - just sent my first complete draft of my thesis to my supervisor. Yikes@

Hi all. Can I ask has anyone done genetic testing in the UK and who did you use?

Well done dimples, that’s a real achievement.

@ElizabethBennetsBoots Dr Maria kinali. Tho tests can be done on nhs if not super urgent and she will comment on results and advise as necessary. Or she can arrange to be done privately of course.

@NameChange30 well done to you both for getting that done! Do you think doing the drops at home may be better next time?

but honestly, I was 1000 pc convinced DS wouldn’t wear his glasses and school said he wouldn’t (before they arrived). He does keep them on 95 pc of the time tho so hopefully DS will too.

Hi everyone, how are you all? Hope you all had a good Easter weekend. I have been unwell with a really nasty cold (I feel the need to specify that it's been a bad one, as "cold" does not convey how rubbish I've felt ) but we have been otherwise ok. Pretty busy and DS has coped quite well with various outings etc - all things he enjoys but can obviously be overwhelming and tiring too. We have some quieter days ahead which we all need.

Thank you all for the kind words about the drama with DS's eye drops.
@Ahna65 I don't know how they do the initial tests for non-verbal children, but with the eye drops (which was the second part of the test for us) the ophthalmologist just examines the child's eyes through different lenses - the child doesn't have to communicate at all, although of course they do have to cooperate with the drops and the examination.
@carriebradshawwithlessshoes I did ask beforehand about administering the drops at home, and the ophtalmologist said ideally she would do it in clinic because of getting the dose right, which is why we did that. But given what an ordeal it was, I think she might just have to trust me and DH to do it next time! She did also say that she could refer DS to the children's eye clinic at our local hospital; I have a feeling it wouldn't be much better as he would still be very distressed and would resist, whatever the setting, but perhaps the HCPs there have more experience and tricks up their sleeves for handling it. Who knows.. I'll have to mull that over next time he needs the drops (am not in any hurry for that as you can imagine).

DS hasn't chosen glasses yet because it wasn't possible straight after the drops ordeal, then the optician was closed over Easter weekend and we've been busy/away on the days they have been open. But we are going back tomorrow morning to choose some, and I think (hope!) it will be more straightforward. I am literally going to let him choose whatever he wants as long as they are a suitable fit.

@dimples76 Congratulations on submitting the first draft of your thesis, that's a fantastic achievement! Hope you've managed to get some rest since then. Will you be waiting long for feedback from your supervisor, do you think?

@Ahna65 sorry missed that qu. No it’s not a challenge for NV kids so long as they have the drops. I have a friend who is an optician who told me that they can test a newborns eyes and get an accurate reading just by putting in drops and then doing the eye exam. That’s all that happened with DS.

I missed your news @dimples76 huge congratulations!!
@NameChange30 I've had a v bad bug too, horrible isn't it, I'm finally getting my sense of smell back!
DS still worrying about having blood tests, saying he won't have them etc. I'm offering a variety of bribes currently!
We're OK apart from all that, had a nice Easter and went out for a fun day out on Tuesday to a farm/ activity place. DS fed a lamb too, he was pleased with himself. Swimming tomorrow then we are away for a few days next week. I'm looking forward to it but also worrying about transitions etc.
The cat has just come in totally drenched and lay across me in bed!!

@ElizabethBennetsBoots i may have missed your commentary on this, are you having genetic tests for DS? Why is that?

@carriebradshawwithlessshoes we went to get a rash checked and the doc commented about his weight, but he's really active and doesn't eat that much, and then I mentioned body hair and other signs of puberty which started about a year ago, which apparently is v early. So they want a blood test to check thyroid and hormones etc but I was also wondering about genetic testing but I think I'm just worrying myself up in knots. He's lost weight this week since we're being more 'treat wise' and I'm sure half of it is all the desserts he has in school dinners, but he does seem to be metabolising food slower than most people and thr body hair is apparently v unusual so we will see!

Ah I see @ElizabethBennetsBoots i hope he goes on ok. They are all so different, my DD is very developed and DS is a titch. DS can’t put weight on, DD is 11 but 5’5 and wearing ladies size 10s! DS saw an endocrinologist years ago for UTIs and he was great and did a growth/ development clinic.

ElizabethBennett'sBoots good luck with the blood test. I have found that the staff who administer them to children are very skilled.

Hope that everyone is better now.

Thanks for the congratulations re the thesis. I should receive feedback next week. Half way through the hols and finding it tough going. DS is rather prone to violent outbursts and shouting abuse at DD and me. He told me to 'shut the fuck up' yesterday- first time he has sworn at anyone. I think the combination of DS 24/7 and worrying about my thesis has left me rather jangly. I also just received the report re autism and ADHD, an accurate but depressing read. Waiting to hear from LD

We’ve had a fairly quiet week; seen grandparents, met up with friends, visit to toy shop and chilling out at home. We postponed a day out yesterday incase the wind was bad.

Ds seems to have embraced chocolate this Easter, he hasn’t eaten any chocolate for a few years. He’s getting a bit more adventurous but mostly in relation to junk food. Still it’s something.