Primary School Auties 11: 2023 is here

[openupmyeagereyes]

Thread 11.

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed
Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2
Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3
Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4
Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1
Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022
Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Hi I’ve not been on this thread I do have a DC (DC2) with a diagnosis of ADHD. DC1 is having a private ADOS his month which has been on the cards for the last few years and then I realised the waiting list times and have decided to pay. I wanted to ask if other people had school observations as part of the ADOS. I know some places do and some don’t. I think I’m just feeling anxious about it all and the place we are using doesn’t do school obs. Haven’t yet told DS as don’t want him overly anxious for weeks but will tell him the weekend before. He knows a bit about different brains etc as DC2 and I have ADHD and I have friends who are neurodivergent some autistic some ADHD. I’m just anxious it’s all done properly. Dc1’s anxiety is increasingly evident - always been there but just impacting more areas - and social difficulties are more evident as the years pass so I’m keen to make the process as helpful as possible in understanding his needs for him and everyone around him. Sorry that was a bit of a waffley post.

Anothermother3 we had an nhs assessment. Before that appointment he had a couple of sessions with a SALT and one of those was at nursery. Her report went to the paediatrician and her boss was also at the assessment appointment. I hope it all goes well.

carrie if you Google online you can find lists of autistic traits in girls & women, though I’m sure you’ve looked at these. How many boxes you can tick might give you a better idea. How is dd in herself? Do the things you mention affect her self esteem or does she seem not to notice?

autismsa.org.au/autism-diagnosis/autism-symptoms/signs-of-autism-in-girls/

the-art-of-autism.com/females-and-aspergers-a-checklist/

danni fab news that ds can ride his bike now. Have you got a bike so you can ride with him? I’d be nervous of ds riding off.

I must get ds on his bike again, I think he may now have outgrown it though.

ahna how easy is it to avoid water where you are? When ds was younger and displayed challenging behaviour around things I just tried to avoid them for a while. Do you take her swimming?

@carriebradshawwithlessshoes unfortunately she doesn’t react to temperature really (in the summer she can also be standing on super hot tiles or something without noticing) so if we let her go in, I think she just absolutely would. @danni0509 so does he go fully in? Or sort of splash around the shallower bit? Is it not super super cold?

@openupmyeagereyes hard to avoid. Lots of the playgrounds have water within them and there are a bunch of canals in our neighbourhood too. And the beach is near and used to be a nearly every weekend thing. We have taken her swimming more on holiday etc and she really loves it but shows absolutely no signs of being able to learn yet. I guess it’s still nice to take her but I’m not sure if it encourages the water thing more - hard to know. Will be so relieved when (I hope it’s a when not an if) she can learn to swim, causes me a lot of anxiety atm!

ahna I thought it was likely to be hard to avoid given where you are. Are you on any forums over there? Others must have the same issues and have some advice. I was thinking that regular swimming might lessen the urge but I can see how it might encourage it too.

Ds can swim a little now but for years he only wanted to play in the water. Although we went quite a bit he made most progress with his regular school lessons. I don’t think he’d do well yet if he fell into deep water but hopefully he’s getting there.

Carrie I think that it's understandable when you have one ND child to be on the look out for signs in your other child. My DN (who is 10 and autistic) has similar friendship struggles. She also talks the hind legs off a donkey but there are other clear ASD traits especially with sensory difficulties.

Ahna I think that I would probably take her swimming more often if she is craving being properly in the water. My DS is water obsessed- in fact one time I asked the geneticist if he might have a rare genetic condition I head read about which includes an obsession with water. He runs into the sea no matter what the temp so the waterproof trousers and wellies I dress him in on winter beach visits of are of little use. He will play up to about mid thigh level for quite a while and then he will suddenly register how cold he is and start screaming.

Danni that's great news with the bike riding. DS can't manage any of the skills needed to ride a bike - balance, pedalling and steering all seem too difficult although he can steer his scooter. I should try again with him but he doesn't want to try.

@danni0509 great news with the bike riding, DH is a keen cyclist and gets frustrated DD won't even try. I thought it was due to her perfectionist tendencies but the OT report says she does actually struggle with balance and stuff that uses both sides of her body.
@carriebradshawwithlessshoes have a look at the checklist for girls. DD's still awaiting her assessment ( which camhs refused as she didn't tick many boxes on the standard questionnaire) but ticks quite a few boxes on the list above.
DS got his first choice high school but have been really upset about it. Not sure if it's because no one else in his class is going there or just reality hitting him. I think he's NT but he does get very emotional about things.

Jules DD got hers too and was crying on Thursday as no one else was going. They were all saying at school we are going to x!!! And she wasn’t (all understood and agreed she had had a taster there the week before and loved it!). I think it’s just the reality, I feel sure when she gets going and the chat In school turns away from x high she will be fine. Hope so for your DS.

He knew it was a possibility as only 2 boys passed the grammar school exam and the other made a different first choice, but I think a lot of it is not wanting to leave primary. He loves the actual school.

Which tbf is understandable. Well done to him though!!! A v similar situation for DD.

@danni0509 really cool about the bike! DD doesn’t seem to understand balance bike even / scooter, just doesn’t interest her at all. But she loves motion so hopefully in time

@openupmyeagereyes yeah, you’re prob right about swimming. They have a weird a rigid system here where kids start a ‘swim diploma’ around 4.5 and basically nobody bothers to take their kids swimming before - so very limited hours for toddler swimming type thing, esp at weekend. but should make an effort with it.

re forums here, so limited sadly! I guess small country snd no mumsnet equivalent and very low traffic on SEN ones. We have a meeting with the school this week to discuss progress / aims so will ask for tips on water. Their report emphasises the fact she doesn’t respond to pain or temperature so guess they will understand, they don’t have water at school though (maybe in the summer). Hope the meeting is ok generally, always find those check ins a bit depressing somehow.

Great new about the bike dani!

Ahna my ds used to be like this with water. We took spare clothes with us everywhere and anytime we were near deep water we used a puddle jumper on him (like armbands). Now he is VERY averse to water, won't go near a swimming pool and it's very hard to get him into a bath even.

@livpotter thanks for the tip re puddle jumper, hadn't seen these but they look great! And yes, being organised on spare clothes is a good shout. I don't know if it made it worse that there were some surfers out (in wetsuits) - maybe she thought that made it even more legit to go in

That is so baffling that he is now! averse to water - and equally frustrating for you. Complex little people these ones...

@Ahna65 it does give hope though. As an experiment this weekend we have walked him into our market town and back and then around a further area. He walked v nicely with no handholding. 6 months ago he would have been like Jess Ennis (going in the wrong direction).

Someone was asking about larger ear defenders. 3M do ear defenders for adults, I think they are designed for musicians. You can get some on Amazon, they might be suitable.

I just went to visit a special school about 20 minutes drive from my house. They have 4-16 year olds and the pupils have moderate learning disabilities and/or are autistic. I think that it could be a great fit for DS. It had a really lovely atmosphere, the HT seemed great and there was loads of outdoor space too. They seemed to cater to a much greater range of abilities than our closest potential option, eg at years 10-11 some are doing 9/10 GCSEs including one doing Mandarin but the majority are doing Entry Level qualifications and they can do motor vehicle maintenance, plastering, bricklaying etc. Only negative is that it is bursting at the seams eg caretaker's cupboard being used as a class room. I am going to request LA consult them at our annual review after Easter. This is probably going to be the start of another long fight!

That school sounds lovely, my borough seems to have no provision for academically able autistic children. Hope you can get a place.

That sounds promising dimples, good luck.

How are people’s weeks going? Plodding on here. After sleet & snow yesterday today is wet and miserable so not much chance of getting out. School is so-so. Overall better I think but with ups and downs which is probably just to be expected.

I listened to a discussion with Kristy Forbes on the Tilt parenting podcast which was interesting. It was on autistic burnout but there was a lot around acceptance and expecting too much from our dc - ie expecting them to be largely NT when they have a ND diagnosis. Food for thought, I think I’m going to listen to it again. They had done an episode together previously on PDA too which I haven’t yet heard.

So-so here too. DD has a cold and could probably have actually done with a day off, but it's World Book Day (which oddly she quite likes) at her school today as they shifted it due to the strikes. It means she's been extra tired after school though.
DS seems to have come round to the idea of his new high school and remembered why he chose it, he's been a lot happier this week. Plus they sent him a lovely welcome letter.

@dimples76 that sounds great. Agree with @Jules912 these seem to be so limited.

We have had a week with lots of appointments on various things. The check in with school was fine, they find that she has settled into the structure of it, goal for the coming period will be communication. The SALT we have is pretty patchy with cancellations etc - she is good and oversubscribed having a bit of a niche in the area (non speaking / pre verbal autistic children) but it is frustrating not to have the continuity.

We had a diagnosis meeting today, seems to be moving forward but will have a few more conversations wtih us as parents and the psychologist will go to her school too and discuss with the in house psychologist there. It is clear that they share our hypothesis of autism, so suppose it is more the specifics of the diagnosis (I understand they include some predictions around level of support needed, future etc) that will be confirmed.

We also met with a potential nanny to cover the hours when DD finishes early - have been searching for ages. This girl just moved back from the US where she studied child developoment and did a lot of placements in autism schools etc. She sounds hugely overqualified and I'm sure for her it would be a stop gap until she finds a more permanent job - that worries me a bit not having continuity but beggars cant be choosers. She also seemed really enthusiastic about helping to apply the techniques the SALT uses, stuff like that.

Next week with meet with someone to help teach us massage techniques to maybe help meltdown / sleep (I'm not so optimistic, but why not try...)

Honestly these appointments feel like a second job this week!!

I did baby a massage course with ds and he always had a great nap afterwards. I hope it’s helpful.

Ds’ sleep has inched back to 5ish at the mo. Hopefully it stays there a while.

That does sound good dimples. I hope it's not a fight this time.

That podcast sounds interesting open.

Does ds start in September Jules?

I remember it feeling like that when ds was younger Ahna. Felt like we were eternally in appointments with ds not wanting to go.

Not a great week here. Had a lot of challenges getting ds in and he decided not to go to school today. We're meeting with the pastoral team next week to try and get some strategies in place. I wish he could communicate what the problem is. I feel very old and tired today.

Oh liv I know how hard it is. Sending a big hug.

Thanks open, and to you. Infuriating isn't it!