Second self isolation period this month - losing my mind

[SinkGirl]

I have twins who are 4 - both are autistic and attend a specialist school. They’ve only been going since autumn half term and they absolutely love it. I had to go to tribunal to get them in, so they lost 8 months there while we fought this. They have a great deal of care needs, I have chronic pain and fatigue and DH is at home working long hours. I work part time for the NHS but from hope and struggling to manage.

After Christmas they went back for two days and had to isolate as a staff member with no symptoms tested positive. Then the whole school went to a two day a week rota.

They finally went back on Wednesday and Thursday - I’m currently in unbearable pain so spent most of it in on my laptop trying to get work done.

Was holding on to the fact they are back in on Wednesday but just got a call to say they have been in close contact with another case and now need to isolate so won’t be back in until a week on Wednesday.

I am absolutely broken already and don’t know how to keep going. I’m in so much pain which is exacerbated by having to lift them so much without the respite of school days. One of them is living on an iPad, the other will not engage with anything and has listened to Old MacDonald about 8,000 times today. It’s not like I can give them an activity or anything, they won’t do it even with support.

It’s not the school’s fault or anyone else’s but I’m falling apart. I’m on very strong painkillers but still in loads of pain and nothing more doctors can do about it so just trying to push through but not sure how much longer I can manage.

Sorry, I know there are no solutions to this - just needed to vent. Theirs is a tiny specialist school, only 7 in their class - I can’t imagine what mainstreams must be like right now. The poor staff, I worry about them too.

This is just a bloody nightmare.

That sounds so tough, even in the best of times it must be hard but now with the pandemic too... well, I can see how you are struggling.

If it was me I'd call the school and be frank about the situation. They may not be able to help themselves but they might be able to advocate for you with some temporary support from your local authority, respite or a carer to help? Don't sugar coat how you are feeling to the school, tell them exactly how it is. If they school won't help you call childrens services at your council and ask if they can offer anything? Or would a family member step in to help? I guess it's difficult if you are supposed to be self isolating to ask others..
I hope things improve for you all

Could your DH take some time off? Parental leave?

Thank you. We actually have an video appointment with their disability social worker tomorrow so I will talk to him - they’ve only recently agreed to a carer a few hours a week in school holidays just to help me take them outside as I can’t take them out on my own. Not sure there’s anything they can do though since they need to isolate. No family to help. It’s brutal, and concerned about what will happen if DH or I get COVID, but also concerned about what will happen with no respite and no therapeutic input etc for months on end. It’s a no win situation really.

Thanks for responding though - I’m just feeling really shit, I’m sure I’ll feel less panicked tomorrow.

@4Mongrels

Could your DH take some time off? Parental leave?

He’s going to talk to work tomorrow to see what he can do. And I’m going to take this week off as no way I can get anything done.

Why is it a week on Wed? Did someone go in today and see them and get a positive PCR test on the same day? Unlikely. So might be worth finding out when the contact was as that is day 1 and it is now 10 days.

My son’s school have twice got dates wrong fro isolations!

They only have to isolate until Sunday (so the contact would have been weds or Thursday last week as those were the only days they were in), but as they are on a rota they are only in on Wednesdays and Thursdays so won’t be back in until Wednesday 3rd.

As a teacher in a special school I feel desperately sorry for you – I know that we have absolutely hate having to inform parents that their child has to self isolate. It’s bad enough when we can’t support you with the usual school provision and we are aware how difficult it must be when you can’t even take your children out y and can’t have anyone to help you with them. I know it won’t help at the moment but I do hope you get the carer for the school holidays – maybe push and tell social services how difficult it is and see if you can get a few hours after school one night a week, or half a day at the weekend? I know that some of our families have been able to get this. Unfortunately you will have to keep telling them how bad it is before you get any support. Good luck and I really hope you get the respite you deserve

I hope you feel better tomorrow. Sometimes things look brighter in the morning (and sometimes they look just as awful!)
One thing that might help is just think of it one day at a time. Can I get through today? Then that's one less day ticked off the calendar. Easier said than done though I know.

Thank you @Shieldingending - I am so grateful for everything the school does for my boys and so grateful they are putting themselves at risk to provide any days at all. I know how stressful it must be for the staff and we value them so much, we don’t want anyone to get sick. It’s just a shit situation all round really and there’s nothing to be done - it’s awful to admit that we find it so hard to cope day in day out as obviously we love them so much, but it’s so exhausting.

As you say Sun, one day at a time. Hopefully between DH and I we can figure out a way to give each other a break and I can survive without smashing the TV after another day full of hideous YouTube nursery rhymes... I am sure they play them in prisoner of war camps, they seem designed to send you insane.

SinkGirl, it must be so so hard, my heart goes out to you and all of the other families in this situation. Lockdown is hard enough with neurotypical children never mind twins with ASD. Do let the school know how hard it is for you - although they don't have a magic wand (we wish) there may be little ways they can help. For example if we have children off ill we slot others into their spaces at short notice. I know that doesn't help when they're isolating but maybe for the future. If your school is anything like mine they will want to try to help. and plenty of for you! And an unmumsnety hug!

@SinkGirl - I’m so sorry to hear you’re having yet more tough times! Fresh air is sometimes the answer to the monotony of television. Do you have a garden you can take your boys out in to?

Thanks @Shieldingending - I don’t drink often but considering taking it up 😂

I know @DownWhichOfLate, it feels like it’s been one absolute nightmare after another this last year but I expect a lot of people feel like that. None of us are sick (touch wood) so that’s the main thing, let’s hope they haven’t caught it this time either. I can’t take them into the garden by myself unfortunately as it’s not safe due to changes in levels and lots of things to put in their mouths (who knew stones and animal poos were such delicacies?) but will try to rope DH into some daily outdoor time. Similar problem to inside though, there’s not really anything they want to do outside but can probably get them in the swings for a bit.

Could you get a double tricycle for them? (I’m trying hard to think outside the box here!). Something like this: www.google.com/shopping/product/6911032739682994168?q=double+tricycle&client=safari&channel=iphone_bm&biw=320&bih=454&tbs=vw:l,ss:44&prmd=sivn&prds=num:1,of:1,epd:6304307235488335693,prmr:1,cs:1

Wouldn’t work in our garden unfortunately- not really a big enough area for it due to all the stupid levels (turns out twins with delays and one with a visual impairment plus raised and lumpy lawn plus raised decking and a low path are a very bad idea!). Those look great though, will have a look for when the imprisonment is over!

I meant to take them out and about. I know you’re in pain but could you take them for walks in it to have a break from the house? I often find the physical effort of pushing a pushchair much less than the mental effort of home play. But I’m physically well so it’s obviously different.

Oh SinkGirl, that is so hard, I am so sorry. This whole situation is so utterly awful and those of us with children who have additional needs are really struggling and at the end of our ability to cope. I took my ds into school the other day and there was a mix up, they weren’t expecting him and there was no way he could stay, I just stood and cried on the yard . And I don’t have ill health to contend with either - I am sorry.

@HumphreyCobblers

Oh SinkGirl, that is so hard, I am so sorry. This whole situation is so utterly awful and those of us with children who have additional needs are really struggling and at the end of our ability to cope. I took my ds into school the other day and there was a mix up, they weren’t expecting him and there was no way he could stay, I just stood and cried on the yard . And I don’t have ill health to contend with either - I am sorry.

I would have burst into tears too. Bless you. This is so stressful for everyone whatever their situation, I know everyone is at the end of their tether. Am just trying to get through today and see how I feel tomorrow. If DH has to take time off then he will, and we will just try to keep all the balls in the air without any disasters and that will have to do! DT2 is actually playing with a very annoying toy for a couple of minutes which is a rarity so I’m sitting for a minute, let’s hope today isn’t too bad!

I do hope so! We just have to keep on going.

I hope I don’t sound like a creepy stalker but I always remember your posts as you write so eloquently about your situation in a way I can’t manage to and it always resonates with me so much, although my ds has a different diagnosis and is older than your two.

That’s really lovely, thank you. It definitely helps to be able to get things off your chest, especially with how isolating things are at the moment. We are getting through hour by hour here, I hope you’re okay.

I am thanks, we have a zoom neurology appointment on Saturday so I am getting ready for that. Lots of lists of questions...!

We’ve got paeds and genetics for DT2 next week. Paeds is virtual but genetics in person which has worried me - wonder whether they’ve finally found something.

I’m also supposed to be having teeth removed under sedation next week. Had to cancel it a couple of weeks ago when they had to start isolating the day before - just praying it can go ahead next week as it was supposed to be done last March! Just praying none of the staff in their class test positive the first day they go back.

Fingers crossed for you for the appointments and the teeth.

It sounds so rotten for you. I'm so sorry. I'm going to PM you if that's ok, I have one small idea which might help you even if not specifically with this period of isolation.

How has your day need SinkGirl?

We managed a successful blood test with ds today - it only took me, DH, one doctor and one nurse. It went surprisingly well as he was actually compliant, although reluctant. Feel absolutely wrung out now, have been dreading it for weeks.

Been not need