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

@dimples76 i recall the confirmation re transport arrangements didn’t come through til v near the end of the big summer hols. I do think though that legally they have to give you transport if you want it and aren’t on the doorstep. Just don’t do what I did and misread the start date then ring up in a strop to be told that the bus would be with us. The following day.

Hi can anyone offer any advice please...
My daughter is 5 she is on the ASD pathway with significant sensory needs, auditory processing disorder, GLP stage 1 very limited communication abilities has all of sudden become adverse to changing clothes this has all of sudden started over the last week and appears to be getting worse.

She gets extremely dysregulated and takes ages to overcome if even attempt to change her clothing so far I have attempted letting her choose her own clothing and spoken to school about not coming uniform which they was ok with

Went to a rather difficult appointment at CAMHS this morning. The nurse I was meant to be seeing was off sick so I saw a psychologist instead. We didn't get off to a great start as she was horrified that he was in mainstream and thought that I should have chosen a different special school (one I had looked around and rejected) not the one DS is going to in September. All in all a bit draining but I think that we are on the right path now.

A medication appointment is being arranged and a nurse will come and see DS at home and school to help advise on behaviour management. When I mentioned DS's pelican collection to her eyes lit up (which I thought a bit strange). However, it turns out that yesterday, a small group started with boys 10-12 with LD called the Pelican! It is meant to help with emotional regulation and is all focused on a pelican's story! Hopefully DS can join them from Monday

What a coincidence re the pelican @dimples76 , sounds like a great group.

sorry about the draining appointment, it’s rubbish when you feel criticised / receive unsolicited views on choices made (well sometimes when they were barely choices in the first place).

We had the overnight EEG this week. I still can’t believe they managed to get the electrodes glued on - combination of physical force, screentime and me feeding DD endless raisins to keep her hands busy away from the wires , and foot massage. Anyway the whole experience was quite tiring, she found it very hard to stay inside In the bedroom we had all day and I had to keep chasing her not to play w the various equipment / tie up the wires. They told me it would be best if she just sat w me on the sofa for the afternoon - honestly I laughed in their face

she did sleep for about 4 hours in the night, so I’m hoping that was enough from a data perspective, and I’m also ‘glad’ that they saw her sleepless period, also when she’s in the state of trying and failing to get back to sleep - could all be pretty interesting data I gusss. We go in next week for results.

otherwise not much new , feels like a tough period lately. Many and frequent meltdowns and evenings very late and difficult.

Hope @Danni0509 is ok.

Agree @SalmonWellington i asked a few months back but not sure if she’s been checking. Think her last message was about some health issues too so really hoping all is OK.

Don’t want to speak out of turn but I do have Dannis number and messaged her not so long ago. She’s busy but her and DS are good!

@Ahna65 great you got the eeg done, well done to you both!!!! Hopefully the results may bring something to the table that can be looked at with the drs.

@dimples76 why did she think DS should be going to a diff school? Glad the appointment ended well and good luck with exploring medication possibilities!

not much going on here. Been a bit of a frustrating week. Found a therapist who we thought may be helpful to DS. I’m a bit fed up with it all tbh so DH for once led on it. She agreed she could. Super positive emails. But very similarly to ahnas experience with the SALT she then fell off the planet and after DH was slightly shirty with her after 11 days of chasing now doesn’t want to touch DS with a barge pole. It annoys me/ us that these people seem to have so much control in such sensitive circumstances. DH said it’s like they play us and it’s their way or the highway. The polar opposite to how we deal with our clients and so on at work.

A work friend said it’s simply supply and demand. The demand for them is greater than the services in supply so they hold the cards and can conduct themselves as they wish. Maybe that’s all it boils down to but it’s very depressing when it happens.

Mummytodo sorry, that’s not an issue we’ve had. Have you tried adaptive clothing? The softest type of fabric you can find? I hope things improve.

dimples that’s frustrating. Why did she think the other school would be better for ds?

Ahna well done on getting through the eeg. It must be nerve wracking waiting for the results.

carrie that sounds so frustrating, what sort of therapist was she? How are things at school?

I’m a bit down in the dumps today. Ds has had a couple of tricky days at school. He is doing better overall but some consistency would be nice. I feel so envious of people who can just drop their child off at school for 6.5 hours without any major problems. It doesn’t feel like a lot to ask really.

@openupmyeagereyes it's always up and down, isn't it? I think that's one of the main differences as a sen parent is that linear 'progress' is not really a thing, more like waves of development.
@dimples76 how cheeky to say the other school was better knowing that you'd already made the choice!
@Ahna65 well done! Hopefully you'll get some answers from the data.
@carriebradshawwithlessshoes it's just rude isn't it? Being ghosted etc. We had it with a speech lady years ago, met DS who ignored her and she went front friendly to frosty theb suddenly 'didn't have space'...glad to hear danni is OK, tell her we miss her!!
DS had the blood test although moaned that it still hurt with the numbing cream, all came back fine, but other signs show he is going through puberty so have got him to wear some deoderant and DH has chatted about stuff! They're learning it as a pshe topic at school too.
DS tried a new sen club and a sports club this week, he enjoyed it all but I'm shattered!! Counting down the weeks already until we gp camping!

Well done on navigating the blood test and EEG ElizabethBennett'sBoots and Ahna. Fingers crossed for your results Ahna.

Open it's no wonder the inconsistent attendance is getting you down. I guess it's like you're always on duty.

Carrie so frustrating to think that you have found help and it disappears.

Psychologist thought that my choice of school was too academic for DS. She also said that her preferred option was more

nurturing and that the teachers worked well with CAMHS whereas DS's school was more hit and miss. Thing is when I visited her choice most of the pupils I saw had severe and profound disabilities and not many seemed to be verbal (DS is super chatty - on topics of his own choosing). I couldn't envisage him in that setting at all and the HT was of the view that he was not high enough needs to get a place. Psychologist has not met DS and I did think that the LD diagnosis letter overstated his cognitive disability - maybe I am kidding myself. I found it odd, given that they could not do the cognitive tests that they didn't mention his reading age or arithmetic skills (which admittedly are v weak). It reads like DS is totally illiterate, eg 'he can recognise his name'. But he isn't he can read a bit but he is only reading at yr1/2 level in yr5.

dimples you know your child best and, as you say, this professional has never met him. The school, presumably, said they can meet needs too. Her opinion is just that, it isn’t a fact.

@openupmyeagereyes sorry it’s a bit stressful atm. As said above, I think our children’s progress is on a general upward trajectory but not linear so it depends on whether we look at them day to day or in the grand scheme of things.

For some reason I had been thinking of @dimples76 last post and comments around the ‘commentary’ attached to her DS diagnosis documentation. Also in the same vein there’s a post on sn from a poster who has recently got a diagnosis for her DS (fine) which has then come with a report labelling him as level 3 asd and other stuff which has been for her really hope crushing (not fine).

i guess it makes me so wary of going down the diagnosis route. That posters dc is actually speaking so DS really would be labelled the worst of the worst wouldn’t he? I know people say your child doesn’t change but reading that in black and white would be just devastating and not as I see him at all. Of course once all this is on his records it’s on. Makes me so apprehensive of any diagnosis process. Is there any way you can avoid this crap whilst (if it becomes apparent it’s helpful) getting a diagnosis for our kids? Sometimes I wish I had done this earlier as I guess there’s less to say when they are little.

Open, how’s school?

feeling v tired and fed up today. In the office but darent trust myself to do much! DS asleep at 10 which is the norm then got up at 1.30 and that was it for the night. I’m struggling to sleep myself atm and hadn’t dropped off really when he got up. I just don’t know how he can do it… who gets up at 1.30 and can’t get back to sleep for the whole bloody night? In the end he just went to school at 8.30 😢

carrie your ds’ presentation/symptoms to date are on his records, all that’s missing is a written diagnostic reason for them. It doesn’t mean that each specialist you see won’t have their own personal opinion on it. When I was applying for ds’ EHCP I sent off lots of documentation from his nursery. I came across notes of an early phone call between them and their SEND team that I was never made aware of. They had written ‘mum is in denial’, which actually wasn’t true at all but I do think it’s indicative of how we can be viewed by professionals.

A diagnosis that has any professional’s qualitative input is only opinion, it’s not fact and it doesn’t mean the child’s future or potential is set in stone. Having a diagnosis of autism can enable access to specialist autism schools which can be more academic.

Ultimately, you’re already worried about your ds and his future even without a diagnosis.

Commiserations on the lack of sleep, it’s tough,

School better Friday and today thanks.

BTW I’m not saying you’re in denial or your ds is autistic, I’m just trying to say that people will have their own opinions.

I think the diagnostic criteria for autism is so wide it would be ridiculous to think DS wouldn’t be on the spectrum, somewhere! Him having a diagnosis wouldn’t bother me at all, and as you say, may be helpful. I think it’s more just what it may bring with it, statements making out for eg like dimples says her DS is illiterate when clearly he isn’t! Or some worst of the worst LD label just because DS isn’t performing on cue to the things they are wanting him to do.

But those are things that are opinion, not fact. I can understand that it’s upsetting, but if it wasn’t factually correct I would challenge it.

i do worry around things like speech and maybe other things that a diagnosis may just give an excuse tho for the professionals to use that to explain away his challenges and accept them rather than trying to change the position. Like, a poster I exchanged messages with years ago said as soon as her NV child got his asd diagnosis school took their foot off the pedal explaining away his NV presentation as being ‘common in’ and ‘part and parcel’ of asd. We had a meet with the paed the other week and she was alluding to asd and kept saying things like ‘ah, but haven’t you thought that that may be why he’s hyperactive/ has poor focus’ and so on. I wanted to say well fine, it may be but then what… you just stop trying to change that? ‘Oh he’s like that because he’s autistic’ is a very big get out for them isn’t it?!

I guess if you’re getting in input you want because he doesn’t have a diagnosis then that’s a big reason not to get one.

I think open makes a good point about diagnosis. It's not always necessary to have one, I guess, and given how hard it is to get on the pathway these days it's maybe not worth the stress?

DD is meant to be going to the orthodontist this week to get a plate for her teeth (first step before braces). I'm trying to decide whether to just cancel it as she's resistant to the idea so there's not much point. But often she changes her mind on the day and it's OK, so I'm swithering about making a decision.

Grouchy I think diagnosis is important, I obviously didn’t articulate myself very well. I found receiving a diagnosis hard, despite expecting it, but for me that wasn’t a reason not to seek it. My point was that if there’s a diagnostic vacuum then others will just make up their own minds - doctors, other professionals, teachers, friends and family members alike.

Support is supposed to be needs based, not diagnosis based.

Carrie I certainly found the global developmental delay label a bar to accessing certain treatment and support, eg SALT. As they just seemed to take the view that whatever the issue was that it was in line with his whole development- rather than my thinking which was how can we improve social communication, gait etc. So I do understand your concern that everything could be ascribed to Autism. I know 4 children with Autism v well - DS and DNs x3 and they are all so different to each other - I know that they require very different parenting strategies and support at school.

So far, I am hopeful that the new diagnoses of Autism, ADHD and LD will help us access more support ....DS is starting the Emotions group tomorrow so we'll see how that goes. By the way the report didn't state that DS was illiterate but I thought that it was implied as the only reference to reading ability was that he could recognise his name- which I guess is PreSchool level.

Hope that it's a better week with school Open