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

I have hopefully agreed an almost term time working hours flexible agreement next academic year - I will have to work half term hols and then 1 day a fortnight during Easter and Summer hols. I really hope that it gets approved soon as it would make the juggling a lot less

It’s tricky isn’t it. I think work would allow me if I argued strongly enough to do tto but the trade off would be that they would want me to do far more than my current 3 days (which is enough) in term time. I do save all my hols for school holidays and Xmas is closed anyway so at the mo I just about manage. I think work would be very worried about setting a precedent for other staff if they allowed me tto and I can see that, we could easily have a big chunk of the workforce off for 6 weeks over the summer which would have a massive impact on the business. It couldn’t be one rule for me and one for everyone else.

it surprises me a bit that none of your DC do out of school clubs. I know a few autistic children, some sound very similar to what we write on here, esp Moomin and Dimples DC. They do hol clubs, obviously it’s known and accepted that they have ehcps but that’s fine, they enjoy the activities and seems to work out (for parents and kids!). They also do things like football clubs, scouts etc. Would yours not do those? I mean general clubs btw not Sen ones, but with staff aware of their profiles. I think having a nv child who doesn’t really follow instructions makes it impossible for us (for those reasons, very sadly) but it seems to work with others… obviously whilst we write a lot about our DC I suppose it’s hard really to understand their full presentations just from our posts, I appreciate that.

They don't work for us @carriebradshawwithlessshoes
DS needs to build relationships with adults before he'll follow instructions etc and his overwhelm can lead to tricky behaviour that needs specialist staff to manage. E.g. telling him to stop it can be triggering if he's overwhelmed. I think they'd want a 121 and it's too much change for DS to cope with. He really needs his holidays to reset and recharge. He wouldn't cope with things like Scouts as he's far too demand avoidant. I'm looking at sen holiday clubs and there is one near here who take slightly older kids, but it's £300 a day so...!! We do have groups who organise sen events so will go on a few of those and do meet ups with school friends to keep in the loop.

carrie ds would need very close supervision as IME these things are usually not very secure. He’s only likely to follow instruction if it was something he was really motivated to do, like with his swimming. As Moomin said, holidays are good for ds to rest and recharge and do some different things. We will likely have one or two play dates a week, see family, swimming lesson and then sprinkle in the other activities I’d like us to do, as well as downtime at home. Plus we’ll go away for a week (hopefully).

Whoops, mine is neither Moomin nor dimples dc.

My DD does do the holiday clubs, and is actually generally ok so long as she doesn't do too many consecutive days and stays away from anything sports based. There's one round here that offers to provide a one to one ( if you pay for it) but so far haven't needed that. I think because she hasn't yet got her EHCP so can't just leave the room at school she's used to that, and her favourite has a tent for her to hide in.

Some of the general holiday clubs do advertise that they take SEN children but whenever I have contacted them and outlined DS's needs they have said no. Last year DS's school did a forest school holiday club at Easter and I signed DS up thinking with a familiar children, staff and environment he would manage fine. When I picked him up on day one his t-shirt was soaked as he had been chewing it and he begged me not to send him back. It is unfortunate that the SEND club doesn't do more hours because DS likes it there. It's 6 children with 3 staff. Also, I had taken DS to a few family sessions there before his first holiday club.

Like Moomin and Open I feel that DS needs holiday time with me to decompress.

Open, I wasn’t thinking NOT you! 🤣. I suppose I only didn’t mention because I imagined if DS won’t stay in school he won’t stay in hol club. He does sound very sociable if he will do play dates. Are these inside? What do they do? I can’t imagine DS on a play date. Prob cos he doesn’t play. Whilst I see him observing other kids out and about he doesn’t really interact with them. He would be doing things like trying to grab their stuff. Not good interaction! Last year on hol he took this child hat off and he went beserk (the other child).

For reasons like that I’m very much on tenterhooks when DS is around other kids/ generally people other than immediate family.

I also would hate play dates with a NT child of DSs age. That would really push me over the edge.

Exactly carrie, though you asked about things like cubs and football too.

Play dates vary, sometimes in each other’s houses, sometimes out at country park, splash pad or pool, clip & climb or soft play. Often they play well together, sometimes ds will want to do his own thing for a while (sometimes the other dc do too). I have to keep a closer eye on him than other parents though he does seem to be getting better - at least at the moment 🤞

That’s great Open. I live in hope!! 🤣. And yes re cubs etc. I often wonder if DS will ever do stuff like that. I was watching a kids football club the other night the boys were DSs age and older. I just can’t ever see it.

Ds can't do any holiday clubs. Like dimples says even though a lot of them say they can deal with SEND they can't.

Ds has too much anxiety with new adults and children. He's never had a play date.

His school does holiday club but only for certain students/age groups and there is a SEN specific one nearby but I don't think he would manage it. So we just don't bother trying really!

can imagine the lack of holiday clubs is tough for school age - similar I guess to what we hear about after school clubs not being workable for DD with limited supervision / mix of ages.

@dimples76 slight tangent but on the t shirt, DD is constant in her mouth and wet, I’m interested for you that this indicates he was distressed / unhappy? I know a bit older.

we had an up and down week. Some awful meltdowns. Summer party at school was a bit mixed too - DD didn’t react to
me at all which was fine, but I was struck by how full on she is for the staff, just very out of control. Tried to climb under the bouncy castle / by the power source / climb fence. Although, also compared to some messages on here, pleased w the school - the women are actual angels. Appreciate it will get harder when she needs more of an education which is not really fulfilled in any way but I’m so grateful she’s got a spot there. No progress on nanny tho and they confirmed in person after school care would be a no go.

happy Friday all - can’t find the wine emoji but ..

Liv, would it matter re the play date if he knew the child well? School friend, family friend, member etc? Would he be ok with that? With DS it’s not anxiety at all it’s about having no idea how to appropriately interact. He is interested in other kids but just doesn’t know what to do esp with no speech or play skills.

Ahna just on that whilst mouthing can mean all sorts for DS it means nothing other than liking the sensation of something in his mouth. He’s a lot better now than at your DDs age but sometimes it’s almost subconscious for him, his ‘go to.’ Sometimes I don’t think he’s even aware he’s doing it.

@carriebradshawwithlessshoes yes - I feel the same for DD. She likes having things in her mouth - could be her whole hand to the point of vomiting but more usually just clothes / toys / food (even when not hungry I think) / grass .. That’s why I was intrigued by dimples - I don’t think it indicates disregulation for her but I could be wrong.

Ahna DS is very sensory seeking with his mouth too. Often chewing/sucking his fingers, making himself gag/throw up (fortunately that's in the past), crunching ice, chewing clothes etc. Most of his tops are worn around the top of the front where he has chewed them. He doesn't like any of the sensory toys/clothing that are designed to be chewed. I try to ensure that he has a varied sensory diet with lots of proprioceptive activities/heavy work and he has 1:1 sessions each week with an OT. However, he still does this. To be honest I don't really mind him chewing his clothes it's better than biting his fingers or pulling his hair out. However, there have been a few occasions where DS has gone overboard with the chewing like the day of the holiday club when the whole of the front of his t-shirt was dripping wet and they have all been on occasions where I would have expected anxiety eg holiday club, nativity in Reception, watching a panto at school.

DS hasn't been on a playdate since Reception. He would basically ignore the other child so if it was at our house I would just end up playing with his classmate! DD is starting to have playdates now and DS has been present for some of them. He has generally seemed to enjoy those (he is 6 years older than DD and her pal) although last time he threw sand at DD's friend. He does play with his cousins a lot though. My BIL has started to take DS and DN5 (also adopted and has significant SEN) to a cookery class on Saturdays which they all seem to love. DS also still gets invited to quite a lot of parties. He has one this afternoon at a trampoline park. He will pretty just do his own thing, check in with me frequently, probably try and go in the under 6 section (as that's where DD will be) and when it's party tea time he will shout commands at his classmates - they generally take that quite well or remind DS that he's not in charge. I am not sure how much DS enjoys these parties and he's normally exhausted afterwards but he always says that he wants to go.

Makes sense @dimples76 . Yes DDs cuticles are always borderline frpm
getting infected the amount she chews threw them.

trampoline party sounds like a good one. Hope it goes well.

dimples your ds is lucky to have his cousins to play with.

Ds’ cousins are all much older than him and as he’s an only child play dates are important for us, especially during the holidays when ds doesn’t see many other children. A couple of NCT friends we’ve known since the beginning, coincidentally both mums are social workers so used to a variety of children and very supportive. Others are people we’ve met since but still known for years. The NT dc have more extracurriculars now they’re getting older, so we see a bit less of them but when they do see each other it’s a bit like meeting up with cousins because of the history.

Ahna totally get the bouncy castle thing, ds was always trying to mess with the air pump/unplug it!

Carrie ds knows how to play but he absolutely won't talk about 'friends' from school. I know there are some kids he gets on with but I think seeing them out of the school setting would blow his mind, he cannot cope with overlap between the settings. If dd has a friend over he will sometimes join in with what they are doing but as dd gets older she doesn't want him being involved as much. Also he does typical annoying brother stuff .

The cooking class sounds great dimples.

Those play dates sound good open. All our NCT people moved away unfortunately so we lost contact. Hazards of living in London!

It's great that you have managed to maintain those friendships Open. DS was 18 months old when I adopted him and the combination of all the appointments (he had 1x physio and 2x portage a week plus lots of medical appointments) and the fact that everyone else that we met seemed to already be in friendship groups meant I didn't really make any friendships then. In the early days I was worried people would recognise that I was an imposter and I didn't want to disclose that DS was adopted to everyone we met so I think that I had my guard up a bit. We started swimming lessons after DS had been home about 4 weeks and I found it exhausting just interacting with the other Mums. To be honest though if I had not had so much family nearby I probably would have made more of an effort.

I do worry now because most of my closest friends don't live nearby that my children don't see me modelling friendships that much.

DD also likes to chew her tops, often it's linked to anxiety but sometimes I think she just likes to. She has a chew necklace but doesn't use it much.

Well it turns out my optimism about the party was rather misplaced. It was great until the last 10 minutes. About 6 of DS's classmates ran out of the party room saying DS's going crazy - screaming and hitting other kids. He then wouldn't leave the room with me, slapped me and punched me in the eye. DD than ran off. Fortunately we have made it home but DS is still hitting/threatening violence.

Oh @dimples76 im so sorry to hear. Last 10min too, nearly managed. How hard for you. Hope you’re feeling ok.

we had a really mixed day, nice beach time w my family visiting here but tried to do lunch on the beach (thinking we could switch in and out with DD going in the sea) and that was an absolute car crash with a horrendous meltdown after a couple hours in sea. DD2 absolutely loved being out for
lunch tho so I guess I’m glad we did it but really mixed experience. Also bad as it sounds I’m always sort of glad when my fam see how it actually is, don’t think they tend to realise

@dimples76 tjink you’re in NE? Obv don’t want to ask anything outing but my fam is going on about some new climbing playground in Alnwick do you know annything about it? Over for a fam wedding end of summer and wondering whether to try and fit it in / extend
to do that

Yes, Lilidorei looks great - haven't been there yet but some friends have and loved it. Planning to go in the summer hols. They seem to have SEN sessions on.

I know what you mean about being glad that your family got to witness first hand the challenges you face. I was chatting to one of DS's classmates Mum's at the party and whenever I referred to DS's behaviour she was kind of 'all kids do that'. When he punched me I think she saw my situation rather differently and was actually very kind and helpful, putting DD's shoes on etc