Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

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!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

Mumof2littleguys1 there were a lot of benefits to my DS of being in mainstream for infants. But we were lucky that his 1:1 was a great TA and really understood him. Hope that your DS's enthusiasm persists.

ElizabethBennett'sBoots
that's a shame about your museum trip. I do worry about some of these SEN events/provision. We went to a free (Council funded) event at a forest school/equine assisted learning facility today. They advertised that parents could drop off the child or stay but didn't ask you to specify what you were doing or what your child's needs were. As it was in the countryside a bolter could have gone a long way. It made me question how much evaluation the LA had carried out. We had a good time and the atmosphere in the woodland area was v relaxing. DS looked v chilled, swinging in a hammock. However, I really don't think it would have been safe to have just dropped him off. I guess anyone can bill an event as SEN. In fairness to the owner she said it was her first SEN session and she was very receptive to feedback. My sister and I were laughing though because she has horses and her eldest (GDD and partially deaf) is terrified of them but today he was grooming a horse!

@openupmyeagereyes right city but smaller museum (v fusty dusty, old white man's pilfered items style).
@dimples76 exactly! I could never just drop off, DS would be terrified! Glad you had fun though. Reminds me of a kids party entertainer who claimed to be experienced either sen kids...10 mins into the show, tight smiles and panicked eyes started!!

With, not either!

What a shame about the museum, will you give feedback? Might help.

we are having an awfulll week. Feels like DD is screaming (and I mean absolutely screaming - sounds like the verge of a fit/ panic attack) for about 6 hours of the day / night. Absolutely unconsolable and nothing helps. She’s also suddenly got totally off bath / shower and that is a huge battle after being her favourite thing. Feel like we’ve gone backwards on understanding anything that helps / her own self regulation. Sounds like she’s been extremely hard work at school too.

we did get the feedback from some physio session that she is hypermobile (‘generalised hyper mobility’), been trying to read up a bit, seems like it would make the general restlessness in her body worse. Anyone else come across it with DCs?

Yes DS is hypermobile, and I don’t know if it’s part of it but often very unsettled in his own skin, jerky movements and moving as if uncomfortable. I’ve asked physios and they are a bit vague. He also hated water for a long time, only used to it the last few years.

I wonder @Ahna65 what’s going on also. DS had chronic constipation for a while which really unsettled him. Sometimes also has physical ‘things’ like discomfort in stomach, or skin and it’s a guessing game as he won’t tell us any symptoms. But he can get very irritable then. I always massively scale back if DS is going through a distressed period - and sometimes gone to the GP also.

Although last ‘distressed’ time was being very tired I think, and I actually kept him off school a couple of days and just let him sleep it off in the morning. The time before it was school that was the problem - a build up of people not understanding him at school - so worth checking and probing perhaps?

dimples I hope the painting and decluttering is going well.

Pimms I hope you can find the right school for ds. How does he feel about a possible change?

Mumof2littleguys1 mine was super excited to start school too and his reception year was mostly very good with a few bumps. I remember how anxious I was though. The wheels only fell off in year 1/2 after covid hit so I’ve no idea how things would have gone otherwise. Does ds have an EHCP and 1:1 support lined up?

Ahna sounds challenging, have there been any changes either at school or at home? Does white noise help soothe her?

@PimmsandCucumbers unsettled in her own skin is exactly how I’d describe. And when it seems like she’s settled for a couple of seconds she gets another huge wave of it. The screaming is so intense it’s as if she’s on the verge of a fit or something.

the main change that coincides with it is the end of the illness, so maybe it’s still recovery of some sort. The new nanny too but this started before that, the nanny has only been once during this period.

the weather is also colder?? Probably not linked but maybe less time outside is throwing her off - I have no idea tbh.

have had some messages with the school today and they recognise the shift too and are trying things like massage but with limited effect as at home.

we are due to be driving for France for a week but I don’t know if we can face it unless things radically improve.

@openupmyeagereyes

He has an EHCP but the content is questionable. He's at nursery and has coped well without a 1:1 so I think I need to see how it goes and kick up a fuss at the first sign of trouble. I think that's a huge part of my anxiety around him starting school tbh. The whole process of getting the EHCP was a nightmare from the start as I was fed a lot of inaccurate information that didn't become apparent until very late in the process.

Hi everyone, I hope nobody minds me hijacking this thread for some advice as we don’t have a diagnosis and are unlikely to be entertained for an assessment any time soon!

I’m becoming concerned my 20mo is displaying signs of (what I perceive to be) autism and I’ve got a telephone call with the GP in a few weeks as that was the best I could get! Firstly, if anyone could outline what I need to do for an assessment that would be hugely appreciated as this is all so new to me.

In terms of traits, I’ve spent hours on the internet and she’s quite conflicting hence why I’m so unsure whether it’s all in my head. She’s always been quite a whingey baby/toddler, head butts the floor sometimes when tantruming (only a small amount, perhaps 10% of the time), doesn’t respond to her name, doesn’t smile at strangers or us unless we really work for it, sit and listen to stories for more than a few pages and she is still mouthing inanimate stuff. She also doesn’t seem to register my emotion - for example if I ever scold her she giggles. If I try and get her to do a puzzle or something she loses interest very quickly.

She does hold eye contact though, give kisses/hugs, get involved in imaginary play (particularly caring for dolls) and is very verbal - she is way ahead on her speech. She is constantly singing and her word count is amazing. Three word sentences etc. She was behind on gross motor but has quickly caught up.

weve had a really rough couple of years as my name could suggest so please nobody see this as me picking fault - I’m truly not - I’d just want to get her intervention as early as possible to help her. She’s all I have. I know it’s a spectrum but I’m already imagining the worst and can’t stand the thought of her experiencing troubles in life. I feel like a monster for even being worried about all of this when a few years ago I didn’t ever even see myself as a parent.

I guess my question to anyone reading is - did you know by this age if your child had ASD and how much does it tally with my daughters behaviours?

Hi @Ivfgottahope yep by 20.months I knew but was in denial. He was v different from peers, no interest in other children, no pointing to show joint attention, didn't react to his name, didn't play as expected with toys, lots of repeated phrases, inappropriate responses, inability to read emotions etc. At that age, I decided to just parallel play yo try and get into his world. We did a lot of tuff tray sensory play, colour mixing, playdo.
He's almost 8 now, very very verbal after starting to speak late, loves doing accents, is learning French and is a real maths boff! His reading has come along all if a sudden. He has a few friends but still isn't that interested in other children. We still have chewy stuff because he still mouths things when he needs that input. He still spins, but now he makes up his hip hop routines to go with it! What I'm trying to say is, even if you're right and she is autistic, she's still amazing. I do worry about how independent my DS will be when he's older, but we can't lose sight of the present in our anxiety.

Oh and we were playing tennis earlier batting beanbags to each other, so never a dull moment 😂😂

@ElizabethBennetsBoots thank you for your taking the time to reply and sharing your story. This is where I get so confused - she does communicate with pointing and gesturing etc and she does show interest in other children. She waved and says hi as we pass them in the street! For me the huge red flags are the not responding to her name, smiling and being quite easily discontent. Because I’m “aware” now I’m naturally comparing whenever we’re out, watching other children giggle intently starting at their parents.

I do have anxiety which I know needs rectifying (particularly if it turns out she does have ASD) and this is also where my doubt sets in as I don’t know whether it’s just me looking for something… she was an ivf baby after a long slog, miscarried her twin and then I needed monitoring throughout for various reasons and she has been really poorly with a defective lung for the past year. I get so worn out by the whinging and demands too I feel like I’m failing her when I get fed up. I’m just not mentally ready for more unexpected situations 😔

Ivfgottahope my son pointed fine, if you asked him where something was in a book he would point to it, what he lacked then was joint attention which is a bit different. At that age my ds was just different to other children. He didn’t enjoy play groups, would just wander around investigating or try to leave. There were a few other things in hindsight: he learned to wave, did it for a few days and then not again until he was two. When he turned one he started to refuse to look at the camera when you tried to take a photo. Just very atypical things compared to other dc. I began to suspect autism when he was two.

@openupmyeagereyes thank you… how would you describe joint attention? If I point at something she’ll follow my lead to what I’m pointing at. Is that what it is?

https://www.hanen.org/Helpful-Info/Articles/Paying-Attention-to-Childrens-Joint-Attention.aspx

@openupmyeagereyes thank you for sending that over… she does have that

I don’t think one thing rules anything in or out, it’s the overall picture that’s most indicative of what might be going on. My son does have joint attention now but he’s still autistic. There were other indicators and it became much more obvious from 3-4yo onwards.

I would speak to your health visitor about any concerns. She will be due an assessment at 27 months?

Arranging a hearing test might be a good first step.

@openupmyeagereyes My HV passed the buck over to the GP so I’ve managed to get a call scheduled in a few weeks. I suspect I’m going to be told she’s still too young and it’s keeping me up at night so I wanted to see what others’ experiences looked like to help fill the void in the meantime. She was a breech baby and had a hearing test at birth which was fine. She follows instructions etc it’s literally just ignoring her name being called. I didn’t even really acknowledge this until others have commented over recent months

@Ivfgottahope if you haven’t already , it might be worth starting a separate thread on the SEN board. Sounds like you’ve indeed had a stressful time and sorry to hear about the anxiety, but it is always a little hard to have these types of questions here (I don’t speak for the others, but for me it is a bit saying to a group of people with autistic kids, please can you reassure me I’m not going to be going through what you are).

for what it’s worth by 20 months my DD had more ‘red flags’ than you mention - no pointing, hand flapping, repetitive movements, spinning in circles . Speech was slow and then regressed totally.

Ivfgottahope things like glue ear can affect hearing, so still worth ruling it out.

@openupmyeagereyes thank you, I’ll most certainly look into this then

@Ahna65 I can only apologise as upsetting anyone was never my intention with asking questions, and I fully appreciate the sensitivities around this. The boards on here aren’t always very clear but just to clarify I’m not looking for reassurance. I’m looking for the experience of others to see how it tallies with my own because at this stage that’s all I can do. After sharing my daughters experience of bronchomalacia which has been horrendous for us as a family, someone else came forward to me to help navigate it for their child and I was more than happy to help because it took a year and relentless pushing for a diagnosis and I just assumed it may be the same with this. Apologies if that’s not the case.

@Ivfgottahope be kind to yourself, its such a worrying time and you've already been through so much. Let the diagnostic process play out and get the support she needs.
We've been watching the women's football this week, really good! Not done much else aside from go out for lunch and a potter round town on Wed. DS has got really into the dogman books so he's been reading them and just lots of trampolining between the rain showers! DS playing his switch (making me play it) and I'm just soooo looking forward to a weekend!! Two weeks until we hopefully go on holiday! Hope everyone else is coping OK with the holidays. Its such a lot of time to fill!!