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

Ds went on his own by the way, wasn’t a class trip.

Sounds like it was spontaneous doesn’t it. A bit odd but maybe they thought he needed a break. Did ds talk to you about it?

Early start here. Ds has a sore throat but seems otherwise ok.

Thank you for the birthday wishes for DS. He woke at 5, asked if he was 10 and fell back to sleep. Dd and I are waiting for him to wake up. Unfortunately the only present he asked for was whistles which I had to veto due to the neighbours' complaints. So I am hoping he'll like what I chose instead although one of the presents is missing in transit (an egg chair). We're having pancakes for breakfast and McDonalds for tea so I know he'll enjoy that. I have hired a bouncy castle on Sunday.

Danni the psychologist my friend is working with at CAMHS isn't really working with her boy. He won't engage with her at the moment - last time he went he was throwing furniture around etc. The psychologist is working with my friend to help develop strategies.

Happy birthday (not so) mini dimples! I hope he has a fab day.

Happy birthday mini @dimples76

Happy birthday to DS @dimples76 ! Hoping for a good year ahead. Egg chair sounds like a good gift.

@danni0509 the school communication sounds like it's still very draining and I think I would feel like I was being somehow criticised as a parent which would p*ss me right off. But your more recent update re the trip - that sounds quite positive. Quite weird they didn't really explain the context to you, but nice nonetheless.

Re reins - DD has never tolerated them, she would just insist on them being taken off. Have not tried the wrist ones but expect that would be even worse than rucksack style.

Last few evenings she has come to us at 9pm with her swimsuit, taking hand to the door etc. Because she so rarely tries to communciate really feels like we have to show we are listening!! BEcause it's been warm we (take it in turns because DD2 is in bed) have put her on the back of the bike and gone for a 20min splash in the sea. She absolutely loves it and it's sweet to see. Then she's slept around 11pm and last couple ngihts has slept through (although evening swims not a long term permanent solution to all of it...)

Still waiting for a proper catch up with work, boss had to travel last minute. Probably next week. Although the nanny is leaving in a few weeks she's really engaged atm, going above and beyond. REally a shame she's leaving.

Happy birthday mini @dimples76 😊

Just catching up now. Unfortunately nothing back from DS’s caseworker or DN’s social worker - however I’ve just had a delightful call with the ombudsman representative who is dealing with mine and DH’s various life complaints and they’re struggling to get hold of her or her manager too and wanted alternative contact details before contacting the director of children’s services instead. I’m hoping ombudsman is a magic word that scares them into action.

All three DC were up at 2:30 today so feel completely exhausted. DS put his water bottle in his bed and it leaked everywhere which really upset him.

DH is very much sold on the new build we went to view which is nice. We just need a school place and for me to keep my job before we can commit to reserving a plot. I’m trying not to get my hopes up. I sent his caseworker a list of four independents that have spaces and feel they can meet need, so hopefully she’s just busy sending them consultation forms rather than faffing. All of the ones I spoke to feel uncomfortably far away, but I’ll need to get over it if it’s our only option.

Am new! Although DS is 10 so not new to additional needs, he is autistic + others.

Loved the story of putting your child on the bike and going to the sea @Ahna65 that sounds in a nutshell what loving care for an AN child is! ❤

@Jaberwockky sounds quite tough with the schools. Can sympathise. Am looking for secondary for DS. I have to say am not that impressed by autistic specialist schools - a lot of good sensory accomodation, and trying to keep it stress free, but try to find one that has any kind of quality learning and education also… not found one yet!

PimmsandCucumbers welcome to the thread. I hope you can find a good secondary provision for your ds, it must be hard.

Ahna night swimming sweet but hard core. I guess a bath doesn’t cut it?

Jaberwockky I hope you had a better sleep last night.

danni have you stopped meds yet?

dimples how was ds’ birthday?

<waves> to everyone else.

Ds up at 4ish the last 3 days. At least it’s easier getting up in the summer, harder when it’s cold and pitch dark. He’s been playing outside all afternoon today so I’m crossing my fingers for better tonight.

I’m in need of programme recommendations if anyone has any? Have spend the last two nights scrolling through everything and not being very inspired!

Good luck with the school search Pimmsandcucumbers.

Ahna The swims sound lovely but I appreciate not sustainable. Would you consider getting a hot tub?

Open hope that DS makes it past 4am

Jabberwocky hope that you get some answers soon.

DS's birthday was pretty much perfect. He had a good day at school, McDonald's for tea then paddling pool time with his cousins at home. DS was having so much fun that he ended up blowing the candles on his cake out whilst still in the pool!

Still haven't heard the outcome of the special school consultation- keep checking my phone to see if case worker has emailed.

That sounds a fab birthday for him Dimples, I’m pleased he had a lovely day! Has the chair turned up? Is it for his room?

Ahna, if I lived so near the coast and a 9pm splash for 20 mins meant DD slept well all night from 11pm I’d be there every night with bells on. That’s an easy win. Lots of sea magnesium! Any nanny updates?

Open, that’s early. We only had one crap night a week or so ago (the heat I think) and I felt horrendous all day. Banging head, really nauseous and after sending a work email to the wrong person (!!) ended up falling asleep on DDs bed at 2pm which was the only thing that kept me going. After a blazing row with DH at 4am due to us both being knackered. Maybe I’m just a wimp.

Danni I hope DS has settled down a bit. It sounds really hard. School do sound a bit useless though. DSs school at least on paper don’t seem phased, when he started they said no child needed 1 to 1 there. I said really? They said kids joined on 3 to 1 but with then didn’t need it unless it was for a medical purpose. Then again they have form for talking the talk so who knows.

Hello to everyone else, hope you aren’t melting… it’s so incredibly hot! Ahna I’d be in the water at 9pm irrespective of the kids at the mo!!!

Hi all, plenty more swims indeed. Sadly hasn’t fully improved the sleep, was up from 3 for the day today and not down yet (2230). Don’t know how she does it… but indeed it’s nice to see her so happy in the water and sand. Pure joy, even if the rest of the day is awful !

hoping for a calm weekend, lots of meltdowns this afternoon I think driven by tiredness.

aw @dimples76 great the bday went well. You’ve got me craving McDonalds.

no luck w the nanny yet but a friend of MiL may want to do a bit. She has an autistic son who is now older and she has some time on her hands. I’m a bit sceptical how it would go with someone older having to be quite physical at times but def open to discussing it.

a boy from DD’s group at the school has moved on, we got goodbye gifts in the rucksack. He’s moved on to residential care which kinda shook me - didn’t really realise that was a route for kids in her class. Anyway, hope it goes well for him of course.

I will go to a summer party lunch thing at her school next week. Quite intrigued, have only been for the odd meeting.

Ahna that is unusual isn’t it, how old is the child? I guess the parent/s are really struggling.

Empathising with the lack of sleep, ds has had a reoccurrence of his eye issue several nights and sometimes he’ll go back to sleep afterwards and other times he just gets up. 2:30 today.

Ds has been doing 1:1 swimming lessons and he’s doing really well. Listens to the instructor which I didn’t expect him to do for the full session. She is great.

Is it that the situation is different re funding/ availability for residential in the NL Ahna? Here I would think save for in real extreme situations it would be imposs to get a child into residential at that age. I think in any event here 8 is the youngest age isn’t it?

that’s great Open!

We are now 2 weeks in to the recommended thing the London neurologist said may help with DSs speech and cognition. Report back from school yesterday was since he started taking it he has been ‘unsettled, biting, scratching, pinching, over excited, giddy, laughing throughout.’ Anyone else see these behaviours? As in not done in frustration but just almost manic over excitedness? DS has fall backs into this behaviour with a lot of things. The med has cost us a FORTUNE. It’s like we can’t do right for doing wrong.

carrie are these sorts of things listed as expected or possible side effects? Did they say how long before you’d expect to see results or how long you should trial it?

Good questions, no Open behavioural side effects are not listed. More stuff like tummy upsets which he’s not had. I actually have an email contact at the manufacturers so I mailed him yesterday. Because the med it not primarily for this they are v v vague about how long we should try it. Consultant has prescribed for 3 months.

DS is so sensitive to stuff tho. I wonder if this is common. Remember when you tried the sleep med with DS open the p one and you said he went strange? I wonder if it’s all just things that play with theirs heads/ brains etc

Yes, I didn’t like that at all and he’d barely had 5ml of it.

Hope that you are having the calm weekend you wished for Ahna.

Great news on the swimming lessons Open.

Oh dear Carrie is his behaviour at home more challenging too?

My DS has been unusually calm this week. We have had a good day meeting up with one of DD's friends. Unfortunately it's now raining and more rain is forecast tomorrow when I have hired a bouncy castle for the garden for DS.

Dimples, as often happens no, it’s not more challenging at home. The odd nip but nothing to write home about.

That sounds really challenging Carrie.

Did the bouncy castle work out dimples. Belated happy birthday to ds.

An evening swim sounds lovely Ahna.

Glad ds had a good week open. Did you say his annual review is coming up?

Hope everyone else is ok. Not much going on here to be honest. Can't believe how quickly the end of the summer term seems to be coming up.

4.5 weeks here liv…

We have the AR this month and we still haven’t seen last year’s EHCP!

I’m no longer worried they will say they can’t meet need. I chatted with his teacher last week, have seen her report for the meeting and the play therapist told me he’s doing really well and that she’ll work with him into next year.

What’s lacking in the paperwork at the moment is strategies to help him in the areas he’s struggling with. Hopefully we can discuss that at the meeting.

Carrie no ds hasn’t settled down, he’s been awful at school, every day still same shit different day. He told his teacher yesterday he was going to stab her eyeballs out and kill her so she was in pain. Then spat in her face and pulled a handful of her hair out. He’s starting with the kids every day too. Just the usual stuff he does every day.

He’s gone for a picnic today with the pastoral team, he’s spending his days with them, which isn’t helpful, as he’s not doing any school work, they are taking him on picnics and well being walks and doing jobs around the school to get him out of the classroom, school is not supposed to be for that. They are having to come up with different ideas to manage his behaviour and get through the day with him. That cannot continue long term. It’s what used to happen in his mainstream, and mainly what’s happened in his special school, not long back he was spending extended periods outdoors or in the sensory gym at SS.

They apparently settle down in special school though! 🤣 2 years later……….

I’m not saying it’s his schools fault. It’s not, it’s ds behaviour, they tell me all sorts they try, but it’s just ridiculous when all the stuff he has in place, (special school, medications, behavioural interventions, etc etc) Dont work!!

He has CAMHS next week. But not really sure what they can do either.

What new medicine is your ds taking?

Hope everyone is ok? I’m sat watching the live feed of the missing sub in the Atlantic, fascinating but terrifying. 😭

danni that sounds really challenging. I hope CAMHS have some ideas. Perhaps school are hoping this is a phase that passes and he settles down again. It doesn’t sound like a long term solution does it.

Ds had a bit of a meltdown at school today. Hopefully incident free tomorrow <crosses fingers>

That's good news re the play therapist Open.

Danni that sounds tough. I do think it might be worth asking CAMHS whether you could have some sessions with the Psychologist to discuss strategies. It feels like for these more explosive children they only seem to offer medication.
CAMHS agreed that my autistic DN11 awaiting ADHD assessment would benefit from counselling. He is now on the list but estimated wait time is 18 months. He and his twin start Mainstream secondary in September so a rather nerve wracking time for them.

DS seems so tired at the moment. Not to rub salt in the wounds of the bad sleepers but he's sleeping 11-12 hours a night and still looks exhausted. I think we might be off to the Docs if this does not improve soon.

I should have heard about the special school consultation by now so have left a voicemail and emailed the case officer today