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

Oh no dimples he almost made it. That sounds very stressful for you, I hope he settles down soon.

Ahna sorry about beach meltdown.

We’ve had a pretty quiet day. A visit to my parents and screen time for ds while dh and I watch a bit of Glasto. Quite muggy here today. Would love some proper rain but none forecast.

We have double bubble bthdays this week. DS Thurs and DD Sun. We have done a traditional family bbq this pm (all adults) which has worked well as the kids had joint presents of a massive paddling pool and new slide so really spent the pm hopping between the 2 and the trampoline. It’s been scorching so really the best thing to do and it means I’ve been able to drink more prosecco than I should have had! Numerous relatives to keep an eye on DS.

Dimples and Ahna, sounds stressful. Dimples this is why I just don’t enjoy other child interaction stuff. Like Open our relatives are all older so no kids but I’m not sure what he would get from kids parties. When I think what he would get from it plus the stress for me it’s a no brainer for us not to go (or host.) not even attempting a party for DS for that reason and I don’t think he really cares. He’s as happy in the pool and on the slide on his own or with dd than with any other kids iyswim. Juice not worth the squeeze and all that.

Hope weekends going well otherwise for everyone.

That sounds like a perfect afternoon carrie, glad it went well.

As you say open it’s v humid tho isn’t it? Or is it the prosecco?? 😖🤣🤣

Happy birthday to your children Carrie. Glad that you had a good day

@dimples76 the party sounds stressful, hope the other days since have been OK.
@carriebradshawwithlessshoes I’m similar, DS still at age 11 finds it very difficult to be with other kids, I’m surprised he can even cope with his specialist school sometimes with a really small class. Part of me would love him to have a friend, or play dates, and parties but he just seems to need the quiet at home and one to one. He’s never had a best friend.
@openupmyeagereyes the humidity is quite high and my dog just droops around the house!

I am struggling today following yesterday's meltdown. We have had a pretty good day and at the end of the day snuggled up to watch Matilda. DS snuggled into me which is very rare but when he smiled up at me. I couldn't help but think that he was smiling at me yesterday when he was hitting me. I just feel that I am all out of ideas.

So sorry you are struggling dimples.

Have you just had his annual review? I can only suggest that you try to get play therapy included in the EHCP and see if that helps. If you are looking to move him to the SS sooner rather than later you should be able to discuss issues and get a plan in place.

@dimples76 not surprised, it sounds so tough and it would be impossible for it not to get to you. Hope you have a bit of support around whilst your mum is away, even just for a chat - any friends that will pop round in the evening?

Thank you Ahna and Open.

His review was in April - going to send formal letter of complaint in tomorrow if I don't get a reply from the case officer by then as it will be a week since I chased her up and their decision is now almost 2 months late. So there is hope there, that things might improve when he is in a better setting. However, I don't think most of you have seen less challenging behaviour at home after moving to SS. Also still on the waiting list with CAMHS Neuro-Disability assessment team and the LA's specialist advisor...they could both possibly lead to changes. I'm also going to contact post-adoption support again because they seem to have ditched us.

I have just had the continence nurse call for a catch up and burst into tears. Unfortunately, I don't think that they can do that much to help us until I find a way of improving DS's underlying behaviour and in particular following the instruction to go to the toilet. Although trying to be positive we're down to about 2 or 3 accidents a week which is an improvement. Do any of your child have watches with alarms reminding them to go to the toilet? DS used to have one but strangely it stopped working after he tried to flush it down the toilet. I also imagine that he would just reset anything that I input.

@dimples76 special school has been literally life changing for DS as he can emotionally regulate much more now. Not always, no, and he can still struggle especially if tired, hot, too many demands etc. But compared to where we were this time two years ago, it is quite the transformation. The main thing being I think that school now build up his self esteem and he likes himself, instead of playing this big villain role like before. Now he has pretendy friends who get up to all sorts and we tell them no, be safe etc. It's like he's testing out scenarios with me via the pretend friends. He's finally toileting independently (aside from needing me to wipe) but it's taken a long time. I think he just had to develop that interoception sense so he needed to know when to go, as us keep.prompting him was seen as a demand so did not work. We and current school built it into his routine instead to start with, so he always goes to the loo before we leave the house for example, and he has picture routines at school with loo times written in.
Had a lovely Saturday at the theatre but yesterday was too hot!! Solo parenting until Wednesday as DH is on a trip.

I needed to read that today Moomin! Glad that you enjoyed the trip to the theatre. My sister took me to see Guys and Dolls at the Bridge Theatre in London last month which was absolutely fantastic.

I think that my negative thinking is worse at the moment because of what is happening with some family friends at the moment. Their son (20) has just been sentenced to 14 months in prison in relation to an assault. The legal team had not expected him to receive a custodial sentence as it was a first offence and he had a lot of extenuating circumstances (in particular his Dad had just died). I just really feel for his Mum, she has been through so much. But also, it makes me worry about DS's future when the violence is getting worse and he is showing no signs of developing empathy and has no impulse control.

So sorry for you and your friends dimples. Is he ND?

Great positive post Moomin, so glad to hear ds is thriving.

Dimples** that all sounds so tough, sorry you're having a difficult time. The situation with your family friends sounds awful too.

I would say special school has had a similar effect on my ds as moomin was saying. He's much better at regulating himself and communicating his needs. It really had been life changing for him and all of us. I hope you can get the LA to respond to you!

@dimples76 sounds tough. I think some special schools do have a good routine, lots of occupational therapy type things - swings etc, lower demands which I guess is what I try to do with DS at home. We don’t do a lot if I’m honest, as if I did try to just have DS in my regular life with other kids, he’d be having a meltdown all the time.

That's good Liv

Had a call from school this afternoon saying DS had been hitting other children and trampling their creations. So they asked my permission to refer him to early support. I know they do safeguarding but also help get a more co-ordinated response from NHS, Education, Social Care etc. It feels a bit scary but hopefully they might be able to help ...

dimples ds was accepted onto early help. It’s just a way for support to be joined up and the route we got ds’ diagnosis. It shouldn’t be anything to be worried about.

That's reassuring Open. The only person that I know has is my friend whose son drowned the kitten and it all seemed v full on - but our situation is not the same

I have never heard of ‘early help’? Who instigates it, a mainstream school? What does it do, who is involved? It’s strange, if this is a resource for schools why dont they promote this (I recall 2 years of ms shrugging saying take him out, nothing we can do etc etc). I wonder if it’s a regional discrepancy?? Think I said before I asked the HV and GP about ‘portage’ back in the day inspired by mn and no one had heard of the word! No one understood what I was asking about. All not very comprehensive is it?!

plodding on here, nothing new to report. dS seems to have stopped biting and pinching so small mercies and all that….

Hello, I've just found your thread and would love to join. Raising our DS with autism has been a pretty lonely experience, as I haven't really met anyone who understands how life is for us.

My DS is secondary school age. He'd love to have a friend or two, but hasn't found anyone he's really connected with. Last week, the SENCO at my DS's school told me that she had taught the other children to tell my DS to 'go away' when they'd had enough of him. I was absolutely horrified, but too upset at the time to challenge her about this. I don't understand how anyone can think it's OK to tell a vulnerable and disabled child, without any behavioural issues, to 'go away'. I was told that she believed my DS needed to be told bluntly. My DS obviously feels sad and rejected each and every time this happens. No one seems to care or consider my DS's feelings.

My DS is moving to a new school in Sep. I informed the new SENCO that the children who are moving to the same school in Sep have been taught to tell my DS to go away. In response, the SENCO has asked me to give her a set phrase they can use when the children essentially want to tell my DS to go away, but not in those terms. I can't comprehend why people think it's OK to tell my DS to go away, however you phrase it. I would be grateful for your views about this and any advice about how I should respond to the SENCO at the new school.

carrie probably one of these things that varies by LA, it could be called something else where you are or maybe there isn’t one.

For us, ds’ nursery applied and once he was accepted they arranged a SALT assessment and booked an appointment at the CDC which was where he got his diagnosis. We had regular ‘team around the family’ meetings to discuss. After he started school they discharged him, saying his EHCP and the AR process would take over. Strangely I had to apply for an OT assessment separately.

GreenTeaWhite I was sad reading your other thread, not sure I have great advice. I don’t think it’s acceptable of the SENCO to do this, it is not teaching the children to be supportive of neuro-differences. Re. The old school, I’d look at the schools SEND policy and complain to the head and board of governors. The new school may require a bit more diplomacy.

Is your ds able to attend any local clubs either for SEN children or not? Sometimes it’s easier for them to make friends when activities are more structured and around a shared interest.

GreenTeaWhite that sounds tough. To me it seems as though the SENCo is letting down all the children as she is teaching the NT socially unacceptable, discriminatory behaviour and making your child feel rejected. Not really sure what if anything the other kids should be taught to say instead- but I guess that they do need to be retaught. There are quite a few groups/activities in my area for autistic teens/children as Open said it might be worth checking those out. What are his hobbies? My autistic niece is 11 and loves horses, her obsessive interest does not really stand out at the stables as they're all pony mad which allows her to interact with a quite a lot of kids there - not really friends but less lonely.

Carrie, I think as Open said it's probably called different things in different areas. It seems to be contracted out to a private company in my county. I am a bit confused why they didn't refer DS before. But it has been rare for him to be violent at school. The Portage post code lottery is really awful - they were brilliant for us. We used to have weekly sessions 1:1 at home as well as a weekly group. I know that has been scaled back in my county too.

Yesterday I put my formal complaint into the LA about not meeting the timescales for AR.

It's meant to be sports day today but school have said that they may postpone depending on the weather. I hope that they do as containing DD whilst I cheer on DS is something I don't feel that I have the energy for next week. Today DS's 1:1 is going to tell him about his new 1:1 next year. Hopefully he will take the news better than me. He has been spending time with his new 1:1 and likes her too.

Hi everyone! I hope it's ok to jump in to what seems to be such a well established and supportive environment for everyone.

My DD is 4 and a half and is heading off to mainstream school this September. She is autistic and completely non verbal which has impacted on basics like toilet training and cutlery use (to name a few 'help get your child ready for school' things that were mentioned on the MS open evening that I attended which has left me in no doubt of how far behind NT children she is). She already has an EHCP and I've requested her coordinator to consult with three other SEN schools in September as there is no doubt in anyone's mind that she needs SEN provision.

Despite her struggles with communication, she is a gorgeous, joyful little girl and I am worried that she will get lost in mainstream entirely. She tends to take herself away from tasks that she is overwhelmed by or doesn't want to do and find a little corner to do her own thing in. Great self regulation on her part but also not great for learning.

I don't really know what else to say and did debate waiting until I had a question for you all but as my own anxieties are building about September I suspect that I might be coming up with more and more as time edges closer! We also have the excellent timing of having a new baby due August 31st so......awesome timing universe!

@openupmyeagereyes @dimples76

Thank you for your replies. I'm going to write to the board of governors after the end of term. I thought I would wait until then, as it seems rather too late to change attitudes there now.

I have looked for clubs for children with autism where we live, but there isn't anything. My loves music, which keeps him very busy outside of school.

Today, while my DS was lying on his back on the grass, he was picked up by a much larger boy and dropped on the ground. The impact of the landing hurt him and as he hit his heart on the ground, this gave him a headache. He was also pushed hard by another boy. I feel sick to the stomach and so sad that this sort of thing happens to my DS at school. 😭

Apologies if I’ve missed anything from the latest posters… @GreenTeaWhite where are these schools, MS or SS? I haven’t read your other thread, do you think these placements are right for DS? Sounds an odd set up, being told to ‘go away’… why? What is he doing that’s causing such an issue with other children? If something so terrible (which I’m sure it’s not) are school working with him on picking up others social cues and so on rather than focussing on others responses? Do they (the school) have the skills to do that or are they just taking the easy/ obvious option?

@Dotdotdot19 what you say resonates a lot. What is her understanding like? Don’t think that being nv means she can’t learn toileting or cutlery use though, or anything she is capable of! She is very possibly sharpening other skills to compensate, you may be surprised.