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

@carriebradshawwithlessshoes her understanding is hard to judge. Unfortunately she appears to have inherited my stubborn nature so if it's something she isn't interested in then you don't have a snowballs chance in hell to get her to do it, you cant even reason with her or bribe her! So she is completely ignoring signs and pecs and seems happy to pootle along leading the adult to things or bringing objects of reference to you like her snack bowl or a cup.

Cutlery she doesn't see the point of because her hands do the job for her. Toileting is an issue because she can't tell anyone she needs to go (although I'm not sure she gets it. I've just been taking her to the toilet and sitting her on it which she is fine with).

@carriebradshawwithlessshoes
My DS goes to a mainstream school. He hangs around the same spaces as others in his year group, desperate for some company, as he's lonely. He may sometimes ask questions repeatedly, which is an autistic trait. He doesn't have any behavioural issues and is a gentle boy.

@Dotdotdot19 my DS was non verbal until 4 and then some words came. He’s never been to MS school, is in a specialist placement. Does your DD have to go to mainstream school? Is there any way you could push that she couldn’t cope?

@GreenTeaWhite that sounds awful - did the school follow up and sort out the boys who hurt your child?

@PimmsandCucumbers our original EHCP coordinator left and the new one, who is very good, hadn't realised that DD had only been put forward to consult with one SEN school. So we have missed the boat for this term as all the admissions panels have finished. I am still waiting to hear from the LA regarding my formal complaint. It has been suggested that in a former life I might have been a pitbull as I don't let things go!

It has been suggested (by the original, useless coordinator and family who 'dont believe' in autism namely MIL) that because DD will stay in the classroom at nursery and even at the table of some activities, she doesn't need specialist support. Who needs speech/communication when you can learn phonics, eh?

My ever so Pollyanna esque DH has suggested that due to DD being a bit reluctant to move out of her comfort zone she might even benefit from any form of change as the nursery staff and us have been trained to understand her without words.

@Dotdotdot19 all sounds very tough. Sympathise w non verbal - feels like such a barrier to so many things. There is an insta account I saw school mum autism or something who talks about potty training NV kids. But tbh I don’t think DD is ready so I haven’t looked into it.

your MIL sounds like a pain in the arse… hope you don’t have to have too much to do w her? Those types of views are so toxic

we had a terrible night even for DD. Slept from 2230-0100 and then not again until… 0630. By which point DD2 was awake for the day and I had to leave for work. It’s going to be a rough day in the office. I’m presenting to a bunch of clients too. DH tried to let me sleep but the meltdowns were so loud.

@Ahna65 did you see my earlier message re alternative/ additional sleep meds? Are you pushing for this?

@carriebradshawwithlessshoes ysah we’ve spoken to 3 different doctors on it but they just absolutely won’t consider anything for her age. Melatonin was already very rare for NL, they are so so anti medication…

The (unreliable) SALT was with her this week and said to us is she getting enough movement at school etc, had the sense she needs more to avoid the climbing fences etc , and mahbe help sleep , but tbh school (and us) have been focused on giving her enough of that for a while now so I don’t think it’s that simple. I do think it’s linked to her sensory needs in some way but haven’t quite figured it out properly . Last night she was going between meltdowns, seeking out small spaces (under the bed) and running from one end of the room to the other. I don’t get how she can at once need a tiny space and to run around. It’s so baffling to me!

@Ahna65 sounds like my DS at that age. Small space is to calm, running is to get vestibular input. I would recommend a big trampoline with a net, a whizzy dizzy, a weighted blanket, and lots of swinging around games and songs (e.g. 3 little men in a flying saucer). School have to be providing the input before she's dysregulated otherwise it's going to have minimal effect as she's already in fight or flight mode. Can they build it into her routine so she regularly has a sensory diet? Sensory circuits often works well. My DS likes the big yoga ball too, to bounce on and also to gently roll it over him. Its like his vestibular system is naturally heightened so needs help to ground it. DS still goes through spinning and racing phases but it's been greatly reduced since getting the trampoline!
@GreenTeaWhite I have no words, how awful for your DS. Call an dmergency review of the ehcp based on grounds that you're worried school can't keep him safe from these bullies!

@Ahna65 - might an ikea Lomsk help? Hood to pull down makes it small place and can spin fast without risk of crashing into things.

@Ahna65 have you seen those pod swing things? Small space and spinning/twisting ability which might help.

Thanks all really good ideas. We do have a fair bit of sensory things around the house but I've just found an ikea Lomsk on gumtree for 14.99 so that can't hurt to try!! THanks @SusiePevensie !! @Dotdotdot19 have not found a suitable indoor swing for the house but will see how the egg chair goes and then browse. I did get one for the garden which I thought she'd love (she does in playgrounds) but very little interest so far. Trampoline would definitely be a winner, the tiny indoor one isn't really cutting it anymore.

Agree that more of a sensory diet may be needed. Maybe need to build it into her morning before she even goes off to school. I know at school they do try but at the same time they want her to sometimes stay at the table for eating / designated 'work' time (it's not work as she's so young but sort of structured tasks) and I do understand these as objectives but indeed it's a tough balance with the movement she needs

Hi all,

I'm sorry if this is not the right place to post this/I’m hijacking the thread. I’m after a bit of advice or maybe just to offload.

DS is 3.5. Last October when he was still 2 our childminder called me in one night and said DS was regularly throwing tantrums, struggled with sharing and so on. I was quite upset. He occasionally threw tantrums at home but I put it down to his age and development, Covid affected upbringing and so on!

She asked if she could contact the LA Senco who worked with her to develop a play plan with just one target being turn taking. DS is an only child currently so turn taking, I thought, potentially could be linked to this.

In the meantime, my HV contacted me to catch up. I poured my heart out to her last summer, telling her about my PNA and she asked me to go for counselling to get help as I was struggling with how my sons first years had gone (my rubbish covid affected mat leave, my sister had psychosis and my mum had cancer for a second time) So I told her about what had been happening at the childminder and she came round to visit us. She said that after a wellcomm assessment that there was no cause for concern and could be age related, and just to see how he got on with his targets.

DS smashed his targets and was working well, no obvious complaints from the childminder and all was well.

In December, 3 weeks after DS turned 3 HV came to our house again to do the next level wellcomm and he scored in the red. Which meant a referral to SALT which was today!

In the meantime Childminder quit for a full time job and DS has had to go to two different nurseries (a long story.) The current nursery are on board with supporting my son. He’s recently developed biting, pushing and pinching!

During the SALT assessment which took place at home, my son was continuously distracted by the same Tetris toys he plays with. Only stopping playing with them when the therapist wanted him to play with her toys (farm and click clack car track). During turn taking which she tried to engage him in, every time it was her turn, he would play with the Tetris pieces again. He also struggled to follow instructions and became distracted by his own toys. But eventually after repetition he could do what she asked.

afterwards when we were talking, she asked me things which convinced me she thinks he is ND. She said he plays on his agenda, his listening and attention skills are limited. He showed echolalia and learned phrases (he kept asking her name, saying your name is…., my name is….and asking what time is it?). She also said he kept twisting his hand (which myself and his dad have NEVER witnessed) and he tensed his body when he got excited! She asked what i wanted from the referral and did I have concerns. I mentioned that I was obviously concerned about the biting etc. She then said that ultimately we need a neuro dev referral as there is a need there and I should push for one sooner rather than later.

sorry for the essay, I’m really feeling quite flat. Up until now he’s always flown through this ASQ-3 assessments and I think the Sp&L thinks he could be autistic.

Does anyone have any similar stories or advice? Thanks in advance

Lots of things there sound like my DS at that age @Supergirl1958
You really need to reframe things though. DS struggling to do neurotypical things isn't him failing (or not 'aceing' tests) and being neurodiverse is not itself a failing or lack. I know it's worrying, but getting the ball rolling for support for DS is the best thing to do. And show him he is loved for who he is. At that age, I played alongside DS in whatever he was doing. Redirect the challenging behaviour with distraction.
I think you might get more advice and answers on a separate thread if I'm honest.

How's everyone else doing? How's things @danni0509 ?

Thankyou.

I think you misunderstood me, I don’t think he’s failing.

I have tried separate threads but never really get anywhere….but I can try again.

Thanks anyway, and apologies if I’ve upset you.

Ill be on my way now.

@Supergirl1958 no, you haven't upset me at all. I'm trying to give you some advice to help, as requested. Sorry if it came across differently. I know how hard it is to step out of the neurotypical paradigm where 'progress' towards things like sitting still, good listening, following instructions etc is the aim. And although those things are important, for many of us sen parents, it's different because our kids are so different so the 'new normal' looks different. My DS, almost 8, still struggles with friendships and its just not as important to him as other things. I still organise social things because I want him to have friends later in life and learn those skills, but I've had to meet him half way. And he's never going to be a person who sits still for long because his differences make it almost impossible for him, so us and school support different ways of learning.
Honestly, you're more than welcome, and I'm sorry if my reply came across as abrasive. I highly suspect I'm on the spectrum too...would explain a lot 😂😂

Supergirl1958 I think if the HV, SALT and, presumably, nursery think an assessment is warranted then it’s wise to go ahead, especially given waiting lists,

As he’s your only child it’s natural that you would make adjustments at home that suit him and make things easier. When he’s in a different environment, he doesn’t have this and differences are more noticeable.

Whether he’s autistic or not he needs support and it sounds like he’s starting to get it.

How do you think he seems when he’s with peers? Can you see differences in him compared to them?

It’s a lot to come to terms with, but it’s better to find out sooner rather than later and it’s better to get support in place regardless

This is a really supportive, knowledgeabke thread @Supergirl1958 - and you've not offended anyone. (I lurk mostly). @MoominMamasTribe is talking a lot of sense - if your DS is autistic it doesn't make him lesser or worse.

Dotdotdot19 I well remember the anxiety about ds starting school and he was verbal and toilet trained! Will dd have 1:1 support? Are her toileting needs specified in the ehcp as I believe schools only provide support if it’s pre-agreed with some plan that I can’t remember the name of.

GreenTeaWhite dreadful what happened to your ds, what have the school said about it?

Ahna sorry you had a rough night and are getting nowhere with meds. Ds was up at 2:15 today so we’ll all be in bed early! Honestly an active day doesn’t knock him out all night. I wish it would.

dimples did sports day happen?

danni did you send a stern email to school?

Ds had a meltdown at school today after his early start, I brought him home early. He fell asleep in the car for 10 whole minutes this afternoon.

Apologies if I’ve missed anyone.

@MoominMamasTribe thankyou again for the advice, it’s gratefully appreciated. I’m ok with whatever happens and I am on board with the help from anyone and everyone, most importantly of all I just want my son to have a happy life. My sister wasn’t diagnosed until 2 years ago and she had a very tricky time from puberty onwards, and went through two periods of psychosis during Covid in 2020 caused by years of masking) she was depressed and miserable because she was misunderstood by everyone. I saw one of our old teachers the other day and told her about my sister and she just said “there were lots of things that went undiagnosed in them days and we just got on with it” I guess I just don’t want him to be misunderstood or mislabelled.

@openupmyeagereyes no other agencies have mentioned a neurodev referral to date just the speech therapist today. Nursery are currently logging DS’ behaviours and we are having a meeting in two weeks to write a play plan together.

@SusiePevensie i agree, I love and will continue to love my baby always.

Apologies Supergirl1958, my mistake.

Ah don’t worry. I’m so new to all this. I shouldn’t be, I’ve been the professional on the other side of this multiple times. My other worry is, I’m very much wanting to get help as early as possible, my fiancé just thinks it’s all developmental and isn’t concerned. He wasn’t at the appointment today, so I’ve told him to make sure he’s available for any future appointments (as many as possible) and he agreed.

Thankyou also for your advice, I know this probably sounds a bit silly but it’s a big thing to process…as it is for all of us

@Dotdotdot19 ah I see, how fustrating! The EHCPs and the different opinions. It’s so hard when they don’t get their act together. I had DS at home for a year with some support waiting for an SEN school as he just wouldn’t have been able to walk through the door of a mainstream class. It does sound like they might take advantage a bit of your DD being able to go into her own corner, and therefore not receive the input she needs. It’s all a bit of a battle.

For toilet training, DS wasn’t out of nappies until he was 7 years old and it took several months of patience. The SEN school thought they ‘would have him out of nappies in a few months’, and as the teacher was quite experienced, I had big doubts DS was ready at age 4.5 yrs but went along with it. Unfortunately he wasn’t ready, and it backfired with DS refusing even to have his nappy changed at school for a while. It set him back I think, so trust your instincts and how your DD reacts. It’s one of those things that gets ‘commented’ on sometimes, so I felt under a lot of pressure to toilet train but esp if they are not able to communicate or understand language that well, or control their body and perhaps constipation or other issues, it’s one of those areas that I think can wait and be done over time.