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?

We are okay. I am just glad it’s the weekend. DH has arranged to take the next two weeks as annual leave - he will probably still have to do some work but it’s a massive load off knowing we can manage it between us. Spent some time in the garden today and then I got to have a lie down since DT2 kept me up until 5am this morning.

Sending hugs to all of you. I hope you’re all okay.

Oh and the poo smearing - if they’re still small, we bought a load of Bonds Wondersuits (zip footless onesies) and they live in those at home. DT2 can still take his nappy off through his clothes but he can’t get to the poo at least. We had a terrible phase of smearing from both of them in December but since we got these we’ve had no smearing unless they’re in normal clothes.

I hope everybody is alright.

DS has started banging his head on things again. It's mostly a sensory thing. Has anybody got any ideas I can try? He already has lots of sensory toys/activities but gets bored quickly.

I'd normally take him out for a walk in the woods for a few hours. We have a communal garden area but it isn't secure so DS spend about 30 seconds in it before wandering off somewhere.

We finally got the letter confirming Ds is on the shielding list yesterday.

He is becoming quite withdrawn which is worrying

Sorry everyone I haven’t been online much in the last couple of weeks. My endometriosis has flared up massively, have been in absolute agony and dosed up, I’m so lucky DH was able to take time off. He’s back to work Monday though and dreading it, I’m so tired, DT2’s sleep has been appalling ever since the clocks changed.

How is everyone?

Oh that’s rubbish. I hope you start to feel better.

We’re all okay (two kids with autism and adhd) though youngest is very hard work - she’s 7, limited language and clashes with her older sibling who is 10 and has asd and adhd as well.

I’m back at work next week and dreading it as my dh is no help as he’s locked away working.

That must be very stressful. My job is very limited hours and very flexible and mostly WFH anyway so I haven’t had many difficulties but it may get tougher (I work in maternity so things are crazy right now). DH and I have had to come up with a plan to manage between us and it’s going okay so far but so hard when both parents are working full time.

DT2 has been awake from 11pm to 5am several nights this week. We’ve been waiting for a sleep clinic appointment for ages and god knows if / when that will happen now.

Only big positive is that DH and I both being around this week has meant we can work on PECS a lot and DT1 is using it all the time now - only for basics but it’s a start. He’s differentiating and travelling so he’s doing really well. Far fewer tantrums as a result.

Hope your feeling better sink.

I’m trying to get hold of Ds dietican which I am quickly realising is a waste of time! Going to try to change feeds myself and hope it get it right.

Oh no Sirzy, it’s a nightmare. I need to get hold of DT2’s opthalmologist and it’s basically impossible. All his other consultants gave me email addresses for their secretaries but the eye department is like an impenetrable fortress. Is he tube / peg fed? Keep trying, dieticians shouldn’t be so overwhelmed right now that they can’t respond eventually!

Yes he is peg fed, our local hospital has had issues with dieticians for a few years so this isn’t helping! Before this started him being transferred to the bigger children hospital for dietican was mentioned so I think I will have to push for that.

I am hoping this leads to some departments being a bit more open with their email addresses! It’s so much easier for everyone to be able to drop an email than try to call.

His old paed gave me her direct email, and I can contact his OT directly too - but then I guess some parents abuse it a bit whereas I’m always so apologetic for bothering them!

I hope you can get some info - I remember how much of a nightmare it was getting in touch with the dietician when they were babies, we waited 8 weeks once just for her to fax (!) the GP surgery to request a new prescription. Not like feeds are important or anything 🙄

Smallest child (7) has put fairy liquid everywhere. In the water dispenser, saucepans all when I needed to go to the loo.

Oh no! Where do they come up with this stuff? I still can’t figure out why DT2 has become obsessed with shoving everything in his ears - he may not understand words but he’s smart enough to know to wait until my back is turned to do it 🙄

How’s everyone getting on?

I had Ds physio via phone today and it was actually pretty good given the circumstances. We moved over to a video call so she could assess him as best as possible with me trying to hold the phone so she could see him and get him to do what asked. Got some new exercises and activities to be getting on with until we can see her

Well that’s something at least. We’ve got a video call tomorrow with DT2’s VI specialist teacher so will see how that goes.

Got all the EHCP tribunal paperwork on Friday and an email from the LA today saying it’s gone to their solicitor to prepare their case. How the hell I’m supposed to beat a bloody solicitor or get prepared while chasing the boys round I have no idea. Spent most of today panicking and / or crying, I feel absolutely useless. Hoping tomorrow is better.

Hi I lost this thread I've just had to manually search and scroll for ages to find it.

Hope everyone is ok?

Bit going on here, bare with me.

Tooth saga firstly. Amoxi didn't work, metro settled it a bit for a couple of days, no urgent dental hubs still running in my area been on waiting list since 25th March, so I had to pay £400 and travel 3 hours to have the tooth removed bank holiday Monday to one of the very few private dental clinics still operating in England. Still got a bit of aching in another tooth which is apparently 'fine' after an Xray I had in jan but whatever! Still wish all my teeth would just drop out.

Ds has been impossible. School have been emailing me checking in on us, yesterday they phoned and I broke down more or less said I was struggling, not embarrassed, they know the score, they 1-1 him and struggle, so she asked me to send him in so I can have respite so he went back today. He's doing 9-3 mon to fri with his 1-1. He had a good day today at school and I managed to get a few things done which I haven't had a second to do for the past month.

I phoned gp today and had telephone consult and got sertraline 50mg which I'm starting in the morning. Hope they work.

Just want all this covid over and get back to normal as soon as poss.

So sorry you had such a battle with your tooth but glad it’s out now. Hope things are improving there.

Glad you have the respite of school back - I keep wondering what I would do if our nursery reopened and I honestly don’t know. The thought of months more of this is breaking me but I’m also scared now of us getting sick and not being able to take care of them.

Had calls from portage and VI teacher today - updated them on the local authority BULLSHIT (sorry) and then explained that I’m managing zero educational material. Actually DT1 has a new app where you trace letters and numbers and today he’s drawn the whole alphabet (the letters don’t mean anything to him obviously but maybe one day!). DT2 is obsessed with two songs which I must sing for him 8000 times a day but he’s learnt the actions and will do them if I hold his elbows. That’s about as much progress as I reckon we will get!

Sorry I haven’t been around. I’ve been dealing with the hundreds of pages resulting from my subject access request for the twins. You would not believe what these people write in emails to each other - if you ever go to tribunal, make sure you do one.

I now know that they know their current setting can’t meet needs but they are waiting for them to say so, and know the hearing wouldn’t happen in time for it to matter. And that they are aware they have a crap case. More determined than ever to fight on.