Support for parents of disabled children during school closures?

[SinkGirl]

Not sure if there’s a thread yet, couldn’t see one.

I feel very lucky that my boys don’t have any conditions that automatically make them high risk for severe illness. I am sure those whose children are in that category must be so distressed and worried so wanted to offer a bit of a support thread.

For me nursery closure is a really worrying prospect - the days my twins go to nursery are my only respite, before they started I was pretty close to fully breaking down.

Nursery staff have been amazing and offered to help us out if they close, to give us a break. Even the managers have offered to have them if we need it which is just so kind of them.

How’s everyone doing?

The problem is that the plans are so bad that any setting could meet their needs because the provisions are so vague so we’ve ended up with the LA agreeing they need a specialist placement on one hand, but naming their mainstream nursery in the meantime and only giving them an extra £4 per hour funding. It’s absolutely crazy.

Trying to get advice, have a call booked with IPSEA on Monday and I’m about to also file a complaint to the LA (and then no doubt the ombudsman) about the shocking assessment process where they kept forgetting one twin existed, didn’t request advice, I had to get hold of it myself then it was ignored. Then they forgot to send his plan to nursery - for nearly two months! They only have it now because I gave them a copy.

I thought they’d bite my hand off to avoid their complete incompetence being aired in a tribunal - apparently not.

Unfortunately not, LAs seem to see tribunal as just part of the process and hope parents drop out. Actually parents win 90% at tribunal apparently.
More power to you!

SinkGirl that's awful. I don't understand this approach at all, it's failing the children and failing the schools.

DS has been brilliant this week but I'm starting to notice an increase in his more challenging sensory behaviour. I just hope it doesn't get to the point we were at this time last year (harming self/others) However much sensory stimulation I can provide at home it just isn't enough.

Sorry all, been meaning to post and seen how everyone is doing but I’m really struggling mentally following the bullshit from the LA on Friday.

Just waiting for the tribunal reference numbers (any day now) so I can request a case management call and see if they will order to LA to seek further advice and actually get plans together which are usable. I’m beyond angry.

The twins have been great over the weekend while DH has been around but of course they’re back to being a challenge now. DT1 already has the iPad which he probably won’t come off until bedtime - parent of the fucking year, obviously.

Ordered a camera otoscope thing so I could look inside DT2’s ears after I pulled a piece of bottle teat out of it on Saturday. Bloody thing doesn’t work, app not available in the UK (helpful for an item sold in the U.K.). Also too windy to go outside. Thank god for the indoor climbing frame I bought a while ago (although DT2 fell off it on Friday and now has a giant bruise on his head).

Is it bedtime yet? 😴

I know that feeling @TheSummoningDark - what sort of sensory seeking is happening? I just got some new flavoured chew toys which are keeping DT2 happy for now. Will see how long for!

So glad there is a thread like this!

I have 12 weeks at home with my 2 and 3 year old DC. Both have complex medical needs and GDD, one has an ASC and SPD diagnosis. The 2 year old is MASSIVELY sensory adverse and the 3 year old is MASSIVELY sensory seeking!

I usually have support from a carer during the day but we are down to night care only at the moment which I completely understand. I usually take them out everyday and our 3 year old goes to nursery too.

I am already starting to struggle. I know a lot of it is the thought of not even being able to take them out for a walk for 11 more weeks. Neither of them know how to play with anything. One needs constant sensory input, messy play etc. The other has hysterics at the sight of anything messy, neither can be left unattended one due to tracheostomy and the other due to self-injurious behaviours. I am trying to do activities with them to keep us all from going bonkers but trying to find things that they can do and they will do.

I really hope everyone finds their way through this and comes out sane the other side! I also completely agree that this is a very good excuse for LAs to shirk their obligations.

Best of luck all!

it's hard, isn't it? I have a teen with severe LDs and autism. I never had respite so no loss there.

I recently started a new job and work from home now whilst 'home schooling'

I I am going crazy a bit.

How are you all doing? Welcome, any new people to the thread. @SFCA I totally sympathise, my twins have such different needs too. It’s so hard.

I’m having such a bad day - DT2 keeps taking his nappy off through his clothes and will not stop putting things in his ears, I don’t know what to do.

DT1 had a huge fall and hit his head - he’s fine now but I’m not.

I need to get on with tribunal stuff but it’s taken me 8 attempts just to type this.

@SinkGirl my eldest has had a bit of a wobbly day bless him, struggling without his routines but not too bad today all in all. Sounds really tough on your end 😕 the only thing I ever found that stopped nappy removal was a pair of tights pulled right up underneath a close fitting swimming costume. My DC is a boy too but desperate times! The putting things in orifices is so hard because they will find things! Would he be able to use a visual reward system e.g symbols for ‘no putting things in ears’ and ‘iPad’ or other motivator? We tried this for our son with stripping, biting and head banging but no joy. I do hope you are ok, you must be completely shattered

I hope everyone is coping ok and not feeling too overwhelmed. I just have to keep reminding myself this will end! I have also started writing things I want to do post-isolation on post it’s and sticking them to a door so I know I have things to look forward to 😊

Unfortunately he doesn’t understand things like rewards - he’s still at the stage where he wants things and can find ways to request them but doesn’t associate one thing leading to another IYSWIM. He doesn’t understand the concept of not doing something either - sometimes I reach the end of my tether and shout at him to stop but it’s pointless, he has no idea what I’m on about (nor does he register if I’m upset, cross etc).

Might have to get creative with the nappies - good ideas there :)

I understand completely, exactly the same with my eldest. He has no concept that he is hurting others or that certain behaviours are naughty, doesn’t understand rewards or consequences. Just suggestions that I have got from others 😂 the only thing that works For us is absolute constant monitoring and distraction but this is not feasible or sustainable right now!

I hope tomorrow is better for you and take it easy on yourself, it is enough to get through the day right now

Fucking exhausted here. A 11,10 and 7 year old. 10 and 7 year old both have autism and adhd and youngest has a severe language disordered so very limited language. I’m also trying to work, husband is locked in his office as he’s so busy so it’s just me trying to work, do school work and watch my 7 year old who is basically a toddler. I know it’s necessary I’m just knackered.

I was wondering earlier if ear defenders or a pair of childrens' headphones might stop the putting things in ears, although they are possibly too easily removed. I had somebody give us some knitted balaclavas when DS was a toddler. They were the only thing he'd keep on, but I'm not sure if that would be a popular idea.

The DIY options sound good for nappy removal. There are specialist unitards available if that doesn't work, although they are more expensive.

My DS is having a much better day. I've put a core trainer on the lowest setting and shown him how to use it. He's enjoying pushing against the resistance.

I hope everybody has a good evening.

Unfortunately he won’t keep anything on (his glasses, hats, gloves etc) so we’ve got no chance of covering his ears unless I can superglue it in place 😂

I think it’s a vicious circle - he puts something in there, he’s aware of it so it’s bothering him, so he puts more in there. I’m hoping it will pass before he suffers any actual injury.

He did something amazing tonight though - DH was reading one of his favourite bedtime books (Hey Duggee obvs) and it says “can you find enid the cat?”, DH always asks the boys if they can buy they don’t know what he’s saying obviously so he points at it himself. But tonight DT2 pointed right at it - and again, three times actually! I don’t know if he understood the words or just copied what DH does but either way it’s a big step for him.

They always seem to do something like this right when I’m at the end of my tether!

Hope everyone has a peaceful night

Only just found this thread . DS 5 has FASD. We have had a difficult day, finally left the house to take a walk . Reminded ourselves why we dont like to take her places. She is Finally asleep,for now.
Hope you all get some sleep.

DD even. *

How’s everyone doing? Took delivery of some garden toys on Tuesday so we now have a seesaw and water play thingie so I’m hoping that will help.

Surviving. Dh has locked himself in the office so I’m left to deal with an 11, 10 and 7 year old and the 10 and 7 year old both have asd and adhd and the youngest has to be watched constantly. I’m also trying to fit work in. Have ignored my boss who has asked if I’m working over Easter - I work term time only so no way am I wanting to work.

Can I join please ? I have 2 children wuth complex medical needs. One v complex . He is 5 yrs old with v rare epilepsy syndrome that has caused massive brain damage so reliant on us entirely. He has Bipap, oxygen , jej feeding tube etc etc so needs hands on round the clock care. The older one has hydrocephalous and is developmentally like a toddler with severe autism and challenging behaviour. Both boys are pump fed and wheelchair users. Since hittting puberty the older one has ramped up aggressive behaviour massively and is hard to contain now he is growing into a fully grown man.
We have a couple of nights a week with a waking carer for the youngest so we can get some sleep but we ended that before the worst of this started so it is down to dh and I for at least 12 weeks !
It is the challenging and aggressive behaviours I find draining the medical care side of it doesn't bother me to be honest.
I am getting through it by not even thinking how long I have been in now ( 3 weeks ! Oh dear just thought about it ) and certainly not thinking how long might be ahead. We are living in day long spaces of time and not thinking beyond that.
On the plus side I keep saying to my husband that the long summer hols which I dread will be a doddle from now on !
Hope every one is okay and keeping well.

I had a bit of a moment earlier when DS felt hot. I took his temperature and it was 37.9. To my relief, it went back to normal within half an hour without me needing to do anything.

The radio is helping keep things calm, and is less of a trigger than the TV (trigger noises include clapping, laughing and coughing).

Managing .Just about. Although DD smeared shit everywhere this after noon. So that wasnt great. But at least I haven't been spat at today. ( touch wood ) . It hasnt been all bad .We managed to get some school work done and dig out a tie die kit from the cuboard. So that was nice.
Hope everyone is alright x

Duct tape around the waist around the top of the nappy worked fir me.

Sorry to hear so many people are struggling, this is going to be really hard. I just keep telling myself it will be over and life will go back to normal. Trying not to think about how long 12 weeks is!

@flapjackfairy it never ceases to amaze me how similar our families are 😂 I have one DC with GDD and very complex medical needs including tracheostomy and bipap and another with over 20 diagnoses including CP, ASC, SPD and complex medical needs. The challenging behaviour so much more challenging than the medical needs. Mind you I am so relieved the shops are going back to normal, both mine are on the blended diet my eldest was so sick when jej fed feed I was starting to really panic we would have to go back!

Stay strong everyone and go easy on yourselves, getting through the day is enough at the moment!

@SFCA
I often see you on the adoption boards I think. And yes how nice to connect with someone with similar children. It can be isolating as not many people get the issues involved. We must keep in touch for sanity saving offloading

I hope everyone is okay. Youngest children with autism is currently obsessed with her iPad. And spends most of the day on that. If it keeps her happy because the moment she’s not we all know about it and the noise upsets her other sibling with asd.