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

Dimples that sounds nasty, I hope you are ok x

Thanks.

Apart from the cognitive test I think DS managed pretty well, so hopefully an accurate picture will have been formed ....

Omg @dimples76 how scary, really hope you’re ok. Good to take some time off. Have you felt any side effects / any effects yet from the anti-d’s?

glad that you think the picture will look accurate, fingers crossed

Dimples this is a completely random thought but you don’t think it was linked to the AD? I only say as I took one once, stupidly at work, it was a new med and I fainted at work, a bit of a hoo ha I was in the lift at the time which was fun. Mentioned to GP and he said a drop in BP is very common when starting new meds for some people. He moved me to another and I was fine.

I don't think that it relates to the ADs as I started them almost a fortnight ago. I think that the low blood pressure was me going into shock. But I will keep an open mind about that. Haven't really noticed any improvements since starting ADs but it is early days and Monday was traumatic.

My mum had a really bad reaction to ADs but she has a bad reaction to a lot of drugs and none of us know why- it's strange. I hope you feel better soon @dimples76

Thinking of you today dimples

Thanks Open. Just came off call with CAMHS. Of course nothing is straightforward. DS now has Autism Diagnosis but not yet ADHD or Learning Disability. So DS 'does present as having ADHD' but because they were unable to complete cognitive assessment they won't diagnose yet. The psychiatrist has referred him to Learning Disabilities team and once they have assessed they will reconsider ADHD. No timescales given ....The wait continues

How are you feeling about the autism diagnosis? What are you going to tell ds?

Open I don't think that the Autism diagnosis has really registered with me emotionally. Other than feeling frustrated that I have had to fight hard/wait so long for DS (who she described as v autistic) to be diagnosed. As I am still in a lot of pain with my back I think that I am just in a bit of a negative headspace

dimples Christmas is a hard time to get this sort of news I think. And, yes, super frustrating for it to take so long. I’m sorry your back is still hurting

dimples hope you’re doing ok.

Ditto everyone else.

We’ve had a good week. Ds was in the Christmas play and thoroughly enjoyed it; he quite likes being on stage. School has been going ok and they break up on Tuesday. We are doing a Santa thing tomorrow afternoon so hopefully that will go well.

I still have a few bits of shopping to get and an order to collect. I have to wrap everything and get some parcels sent. Thankfully dh is off next week. We also need to dig out ds’ stuff which is stashed all over and see what it all looks like.

We got back from the carol service at our local church. It probably wasn't the best idea to go. Went with dd2 who is 19, dd3 (14) and dd4 (4). It was dd4's birthday yesterday so she's probably still excited from this. She made quite a few embarrassing comments during the service in her loud voice, including;

'Blah, blah, blah'
'I give up with this'
'Mummy, I want to smell your lipstick'

Meanwhile, dd3 who was at her own sensory limits due to having been horse riding all day was doing weird things like putting the hymn book on her face because it was 'relaxing' and whistling instead of singing (!)

I had this the other way around with dd3. She had an ADHD diagnosis at 7 but they wouldn't diagnose her with autism until later because they said that it was too difficult to figure out if she had both. She was eventually diagnosed at 9. I did push this though - it's quite frustrating isn't it?

Open that sounds very positive and you sound v organised.

Myopicbunny I think that it's often worth trying things like the Carol service. We were going to go to one yesterday but I didn't feel well enough. We went to a festive light trail this evening with extended family. One of my DNs was being vile to his Mum who was very upset. I think that it was too much for me with my injuries but I did make it round. It was v pretty and my DC enjoyed it.

Myopic belated happy birthday to your dd. Well done for getting through the service. We went to a Christening when ds was 2 and he was only in the church briefly but he shouted loudly at one point ‘oh for goodness sake!’

dimples I feel I have rather a lot left to do, I’m not feeling very organised! Glad you enjoyed the light trail.

Hi all. @dimples76 I am sure the diagnosis will take some time to sink in, always a mix of emotions, and indeed the time of year. Light trail sounds nice, I was at one on Saturday and I wonder if it was the same one (I think same region but I know there were a few on..)

Travelled to UK this weekend for a quick family visit. Used the sunflower lanyard for the first time - it's not officially made to enable queue skipping but they did offer us to skip passport control queue which was very very busy and hectic. Plane itself was OK. Weekend was mixed - often feel quite judged re my parenting by my mum and she seemed to find it stressful having us around (I guess it is). DD was extremely vocal babbling the whole weekend , sounded happy but could have been stress. She had a huge meltdown when we got home.

Has school finished for everyone now?

After sleeping better for a good while (5/5:30 is better here!), ds has woken earlier the last 3 or 4 days. He’s also being a grumpy PITA in the evenings and when screen time is finished for the day. I’m getting rather fed up tbh, though I know it’s probably just tiredness/Christmas buildup etc. It’s just getting quite predictable and wearing. Sigh.

Oops lost my message.

@openupmyeagereyes although a good patch of sleep is always welcome it seems to hit harder when it stops again!

DD finishes school today, but only a week off. DD2 can continue at nursery if we want but I always feel guilty doing that - although may send her for a couple of short mornings next week.

We have had a busy week (like everyone I guess!!). Had another hospital appt. The specialist says based on all the info so far he has a working hypothesis of Landau Kleffner syndrome but EEG will be important to look into it further. IF it was that, I think the proposal would be trying some sort of steroids (to stop the seizures - LKS is characterised by continuous seizures during sleep, but not convulsive so you cant "see" them really). However he did say that sadly the steroids don't tend to help outcomes much in terms of speaking, learning difficulties etc for children who had onset (i.e. the regression) very early on. And that would be effectively more than 2 years where DD has been just having seizures through the night. Nothing confirmed yet, but it seems to correlate with the facts of her regression so I'm kinda expecting it too. However, I guess just continue with SALT and all the usual support things in parallel. Although I feel increasingly my hope that she may be one of those kids you read about who just suddenly starts speaking again are fading. And my push for one language at home to try and help her a bit seems like it may be a waste of time - but I guess that's where we are now.

Have a few social things with in laws etc planned in the coming days. Although the 25th will be low key, I wanted to feel some xmas vibes so we've tried to spread it out a bit. DD2 doesn't understand why she can't unwrap anything yet (fair enough I suppose!) so she's shifting between excitement about it all and tantrums when I say no.

Hoping everyone is OK and feeling festive ish.

That’s a lot to take in Ahna. How certain of it can they be after the eeg? I hope you’re doing ok, such a crappy time to get such info. We got ds’ dx about a week before Christmas.

Ds still having his moments, we had shouting early this morning over a game he was playing. Thankfully our neighbour has now gone away for Christmas.

We didn’t really do anything today but plans with friends and then family tomorrow then more family on Christmas Eve.

Wow, and I thought that I had a lot to process, Ahna.

Hope that the sleep improves again soon Open.

Day 3 of the hols here and not too bad going so far....Yesterday we went to a SEND cookery and craft session. I wished that CAMHS was there to observe - none of the other SEN children were half as restless as he was. Unluckily there were lots of windows in the room all with blinds so I spent a lot of time fixing blinds that DS damaged.

Haven't received the report with Autism diagnosis yet but I think that there are a lot of problems with the post.

Can't remember if I mentioned injuring my big toe. I had thought that it was bruised but after initially getting better it has got worse. I went for an x-ray on Wednesday and the radiologist said they would request urgent report back to GP. I called the GPs earlier and they didn't seem to have received the results. I guess there's not much they can do any way. DS accidentally stood on my injured toe yesterday. I shouted out and he said sorry, is that your bad toe? When I said yes, but don't worry, he then stamped on it. Living the dream

I am dreading Christmas morning because DS really wants a projector screen but is not getting one. I have told him repeatedly that he is not getting one (he mentions it about 100 times a day) but he won't accept it and said that Santa says that he can

Hi all. DS totally over excited and overwhelmed already. Running around the house shouting out random words on repeat! We made mince pies yesterday which was nice but didn't do much else. DS has been v full on today. E.g. doing things he knows he shouldn't then shouting 'what?' at me, then if I say anything, doing it more (e.g. singing loudly through a pop tube, slamming the door). But then he has these calm moments when he just looks exhausted by it all too. DH has been out two nights in a row which isn't helping. I am ready to open the gin!!

V quick one from me, may be my last before Ny but wanted to say have a fab Xmas all. DS finished school today so preparing now for it to be full on.

Ahna I googled that, the stats seem to be 1 in 1,000,000 so v low??! V low to comment without an eeg given that a lot of asd children regress and won’t have this syndrome? What do I know though? Why does he think she’s having sleep seizures or is he purely going on the regression element which as said, many ASD DC have, don’t they???

DD finished last week so we have had a girly week. She has had her ears pierced and a manicure! It’s nice I often to find to have time with one DC but not the other which ever way around it is. Obv having a girl at her age means she likes attention for things like nails and make up so that has been nice away from DS.

this eve I’ve hosted a fam party just for a few people (11). DS has been shattered but good! DD insisted on doing make up for all family members who are female. They therefore arrived looking normal and frankly left looking like they were heading for a street corner with a charge out rate but took it in good spirits 😱😬😬.

anyway will be reading even if not replying. Sending lots of good wishes and keep posting x

Elizabeth, do open the gin???!!!!! Def time 🤣🤣