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

They said that many NV people didn’t speak because of ID

what’s ID?

I suppose the programme is trying to show a range of individuals and assuming the average audience member will have zero understanding.

AAC seems a fairly effective way to communicate because of all the preset words & sentences. Completely opposite to the method used by the guy who wrote the reason I jump, for instance.

Honestly, even though my ds is verbal and very expressive, I have no idea what the future will be like because he is so obsessive and repetitive. I mainly try not to think about it.

Intellectual disability.

its an interesting watch open, when you see it you will see what I mean re the aac. He’s not able to join in conversations, join in banter with siblings. He finds that really frustrating. I’m interested to see what you think.

Ah, I didn’t realise he was using AAC. Yes, I suppose most things are not quite the same as spontaneous conversation. Hopefully they can still get their views across.

Light re. school, it’s hard to know how much is down to transition and how much is just the school. It doesn’t seem to be the right environment for him but I don’t know where else would be.

I think in the documentary for Murray the additional challenge was how his apraxia affected his motor skills. I imagine that someone who is unable to speak but who has greater dexterity would be able to communicate more quickly (unless they had learning disabilities).

It's tricky with school settings isn't it Open

I just took DD to a party of one of her nursery friends. It was so different to party going with DS. I chatted to some parents I haven't spoken to at all and found it a bit uncomfortable at times. One Mum was asking if I had any other children and was seemingly v shocked by the 6 year age gap. When I explained that DS is developmentally a lot younger than 9 I felt that I then became the object of pity - little do they know, being DS's Mum may be challenging at times but I know how lucky I am.

DS has never much participated in imaginary play but DD is teaching him now. It's rather wonderful how their play together (when DS is not screaming at DD) has come on.

dimples how lovely ds and dd are playing well together. And it’s nice to count your blessings isn’t it. I was worried for a long time that I’d left it too late to have a baby (not that it was through choice) and now I have my ds. I couldn’t love him any more.

Argh just replied then lost it.

Open, what do you think isn’t right about the current placement? If you were hypothetically able to create him a place from scratch what would it look like? How is it different to current. This was the exact topic of conversation with the paed in a catch up call Friday.

dimples I had said that to avoid the ‘pity’ face I avoid saying too much about DS in conversations with people who don’t know him. Beyond his age, relationship with DD and that he has some communication challenges that we are working on. And I said that 6 year age gap isn’t that unusual! Theres 7 between DH and SIL.

I hope back to school went ok for everyone. It was surprisingly good for us given ds was speaking so negatively about it.

That's good Open, hope it went well for the rest of you. Our hols have just started. I was at work for the day but I have a few days off now. Wish that involved a lie in but I am looking forward to pancakes for breakfast

Enjoy the hols dimples.

Weirdly, DD went back totally happily and DS had a wobble! I would wonder if he was coming down with something except we were all ill all through half term until the weekend, so (a) didn't go out much to catch anything new and (b) would seem rather unfair if DS comes down with something new so soon after recovering! Hopefully it's just a little transition wobble....

Fingers crossed Light

Light maybe it’s just a result of being ill and not quite 100% yet. I hope he’s ok today.

DD went back happily yesterday but was complaining about being tired and not wanting to go today. @LightTripper like you, I do wonder if she's coming down with something but we all had Covid over half term so didn't do anything. Well I think she did as everyone else did and she had a fever for a couple of days but she won't let me near her with a test.

Jules I test ds once he’s asleep. A quick swipe around his nose was enough to get a positive test when we had it after Christmas.

Sorry your half term was spoiled.

I had a review of ds’ melatonin with the GP today. She said that she did refer to community paed and that it must have been redirected to CAMHS. She also said that as it’s been 6 months and we didn’t get anywhere she’s happy to trial
ds on a higher dose of melatonin. She’s ordered a script for an additional 1mg tablet so we can trial 3mg. I’m happy with that, I think it’s the right next step. I’ll speak to her again in a couple of months.

I watched the CP documentary last night and I thought it was excellent. I agree with dimples that Murray’s motor skill difficulties compounded his frustration. It made me wonder when more advanced AAC became available? Possibly there was not much when he was 6 or 7. I need to look it up. I really felt for him when he talked about how badly he wanted to talk. His anxiety was so high wasn’t it.

carrie fwiw from what you say, your ds doesn’t sound the same as Murray now, nor likely when he was younger. There are more options than there were 10-15 years ago so hopefully the frustration does not have to be so bad. Have you seen videos on the IG account Stories about Autism? His younger son, Tommy, is very adept with his AAC in terms of requesting. I think he’s about 10yo.

When I say he’s not the same, I’m talking about behaviour and anxiety etc. I’m not talking about intellectual ability.

Hope that the revised dosage helps Open. I wondered the same as you re the technology for Murray.

I watched the second part of the documentary last night. Did not find it as emotional - apart from seeing the participants' pride and joy in sharing their stories, which set me off blubbing again. Hearing one of them describe sensory overload was tough too - the sound of chairs scraping, footsteps on carpet etc. I think that I am a bit over sensitive to certain sounds and it really makes me feel that it must be tortuous and overwhelming for DS and others. Overall though the participants were all functioning at a much higher intellectual level than DS so I don't think his life will look anything like theirs - not a criticism of the programme as I think it was still very illuminating.

The organisation that has been providing DS and I with post adoption therapy has gone bust. So I am now seeing if I can get some of the funds diverted to OT ....I think the company which provides the school based OT through EHCP is also an Adoption Support Fund approved provider. I thought if I could get the OT who works with DS at school could do some work on sensory diet at home that might help .. It's not going to be the same without our wonderful therapist.

dimples I suppose they have to use individuals who can express their experience in enough detail. It’s still indicative of the experience of other autistic people whose intellectual ability may not be as high?

Sorry about the therapy organisation. Did they say why it had happened?

No Open - she was just focused on trying to find a plan to help DS and me. I found it v surprising as I had imagined that it was a secure financial model (given the ASF is a reliable payer).

Do you have direct contact details for your therapist @dimples76 ? If they land somewhere similar, maybe you would be able to get the funding diverted there? Such a shame :(

Ds told me he had a good time at school yesterday. Today he’s refusing to get ready 🤷🏻‍♀️

Oh dear @openupmyeagereyes , did he go in? We had the opposite, DD had an awful day yesterday (Headteacher called to say she had to be taken out of class to cool down, not had that for a while) but was happy to go in today.