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?

You are all doing an amazing job. I am the parent of a young adult with autism and severe behaviour issues and a teacher. I know just how hard it is and how much is being asked of you.

Good enough will do is our thoughts at home at the moment. Best case scenario the requested learning from college happens. If not, then hopefully he will learn some life skills. As long as I keep him and the rest of the family safe then that will be enough. I am in work tomorrow so he will be worrying himself silly and being a handful for the rest of the family as a result. I feel so guilty for putting him through this.

Hi can I join in? I've got 5 dc aged between 13 and 5. 1 has asd, 1 has asd traits, sensory processing issues and ehlers danlos syndrome, 1 has global development delay and health issues, youngest has global development delay and being assessed for asd. And I've got an nt child as well. My 5 year old has mostly stopped biting me now but is still screaming a lot. My 6 year old keeps wetting himself. If we do 30 minutes of school work each day we are doing well.

@danni0509 I’m so sorry, it sounds like you’ve had an horrific day. I have spare glasses frames here - I know you’d have to get the right lenses put in them but I could send them to you if you can’t afford new frames? Do you want to talk about things with your DH? Sending all the hugs to you, I wish I could do something to help.

@Blondephantom please don’t feel guilty. You have nothing to feel bad about, you’re doing an amazing thing helping others. I know you must feel so torn.

ellie you have 5?! I have no idea how you’re managing that, that’s incredible.

I think keeping everyone alive and out of A&E is all I’m shooting for at this point.

Sinkgirl, you are very kind but it does feel wherever I am, I am being pulled in the other direction at the moment. Always feels like we could be doing more despite doing our best though. Keeping everyone alive is enough.

Teachers know that not all children can learn at home. We know not all families can facilitate learning as parents are working from home or have their hands full or just aren't sure of how things are taught these days. When I get all my class back, some will have done everything and more, some will have done nothing and others will be somewhere in between. None of those things really matters. As long as they come back safe and I am still here to teach them, I'll be thrilled. Missing them incredibly and it has only been a couple of day!

@SinkGirl
Why the fuck did I tell nursery they didn’t need to go?
You're allowed to change your mind, having given it a go.

Mine's not in school? has echp and 1:1 full time TA. I declined him going to school, knowing that if he/I couldn't cope at home he'd be going in, wether that was straight after easter or in july, and I'd have no guilt about his needs or mine.

I know keeping them at home is the right thing logically. DT2 has a medical issue that could be serious if he becomes unwell and is unable to eat (he’d have to be hospitalised). DT1 had a sleep study a couple of weekends ago. I saw his oxygen levels drop down to the low 80s a couple of times on the first night but we didn’t get the full six hours of data. On the following two nights i think they were normal. So he has no diagnosis of a respiratory issue at this point, still waiting on results but I suspect there is one (I’m guessing OSA from enlarged adenoids, DT2 had them as a baby but luckily they resolved) so I’m worried about that being exacerbated if he caught it. And frankly my biggest fear is them bringing it home and us getting it - we have no family to help so if even one of us ended up in hospital we would go under.

So I know I really need to keep them home, but knowing it and coping with it are two different things!

I found a new iPad app today that DT1 likes (a puzzle thing that’s a bit trickier than what he usually plays) so I guess tomorrow I’ll let him play with that while I try to get DT2 to engage with something. He will have fleeting moments where he will stack up pieces of a toy or play with the beads on another but there can be hours between these few seconds where he is just bored and frustrated. I can’t look at Facebook right now, seeing everyone’s timetables and activities and kids doing things (which is unfair, that’s what most kids do!). What I wouldn’t give to be able to sit them down with some crayons or play doh and have them use them properly and not just eat them.

Sorry, I don’t mean to complain so much - today has just kicked me in the balls but hopefully tomorrow will be better.

@danni0509 I’m worried about you - are you okay?

Sink ds had obstructive sleep apnea.
He had his tonsils out when he was 4yr 8m, at that age he was developmentally 12-18 months, after that he made so much progress (learning. Not behaviour sadly lol) he started to learn to hold a pencil and write a few letters (at 6yr 3m he's just about writing his name now) and he's about at a 4 year old level with his development now but socially and behaviourally still at about 2 yrs but that's the autism obvs.

What I'm saying is osa is known to contribute towards development delay I read loads about it and it's funny how ds did start to make progress after that, so that maybe a chink of light for you.

I'm ok, thanks for asking I told Dh to get out I often do because he's working so much and no help to me at all. Gets a bit much sometimes doing everything single handidly x

Hi to everyone else x

Oh and sink ds had his adenoids out aswell. His sats were low like that, the machines bleeped like mad all night during his sleep study.

They turned the bloody alarms off for the study which meant I didn’t know when it had come off the first time we did it. So they gave it to us over a weekend and that first night he was snoring as usual, and his level was like a yo-yo every time I looked. But he removed it several times. Perfected the technique on nights 2 and 3 but those nights he wasn’t snoring and any time I looked at it it was 96-99. No idea if it dropped in the night.

I said exactly that to his paediatrician and she said she’d never heard of that happening - but I’m sure I’ve seen studies about it. He breathes through his mouth in the day too quite a lot of the time. DT2 sounded like a warthog until he was about 1 and he was almost fully obstructed but then it just seemed to get better and I don’t think he has any problems now.

I can’t imagine managing all this alone - DH is generally really good. I’m so sorry you’re having to cope by yourself

I've just apologised to ds over his stair gate he's asleep now thankfully so although he can't hear me it makes me feel better knowing that I've said sorry for being a snappy bitch today.

Always feel guilty when I've had to tell him off all day. (I only feel guilty when he's in bed and the house is quiet and I've got time to think) Although in my defence he really does need to be told off for some of the stuff he does.

He pulled a handful of my hair out at bedtime for no reason whatsoever, the hair in his hand had the bulbs on the end, literally ripped it from the root! my scalp is red raw and bleeding anyway and I have to put creams on because I'm covered in psoriasis so just don't need him doing that.

Tomorrow is a new day. Surviving is key but also I hope to get my bedding back on at some point bcos I've just got into bed with no sheets pillow cases or duvet covers on because it was way to much effort after today's events 🙃 I'm to tired to give a shit.

Dh thinks he's losing his job this week so he might be home to help more. He works ridiculous hours and if he's not at work he's dead on his feet at home so he's neither use nor ornament to me, this is a lot of the reason we aren't getting on at the minute because of the lack of help.

Him losing his job probably won't be a bad thing in the grand old scheme of things.

Night all x

Ds's special school have now shut to all but key workers children so basically we are screwed. We know we cannot manage this for months on end with no respite from it. Will now have to try to get hold of his social worker.

Hope you’re feeling okay this morning danni. A friend of mine has a hair puller and and she shaved her hair down to a grade 3 just to stop him being able to pull it out. I could not pull that off personally 😂 Hope you have a better day today. I know what you mean, I always feel awful once they’re in bed if it’s been a day of shouting and stress.

Hope you can get some assistance under. Apparently we don’t qualify for any help from social care (just heard this before all this kicked off). The criteria here are ridiculous.

I had to go for emergency dental appointment this morning, thankfully they got me in at 9.45am so I picked my mum up in the car she had ds in the back of my car on the car park (she can't manage him at her house) and in the car he's harnessed into his seat so can't go anywhere!

Anyway, I had an X-ray and I have an abcess so I'm on antibiotics for 5 days and having the tooth removed as an emergency slot Monday morning.

£145 poorer for 2 appointments and antibiotics but suppose it's a small price to pay in the end.

I have to have the tooth out as it's half snapped and already had a root canal a few years ago but it's my upper canine tooth so I'm going to look attractive next week 😬🤣

Going to need to save up for a false one!

Oh bless you, you must be in a lot of pain - I had three abscesses in a few months last year but the antibiotics worked quickly to ease the pain.

My teeth being removed under sedation next week has of course been cancelled. Praying I don’t get another infection too. Mine are both really broken too.

At this point I’m wondering if having a tooth out might be a pleasant rest 😂

I wrote a long post and lost it, hope it's ok to join.

SinkGirl sorry if you are already doing this, but the Surprise Box activity was the only thing my DS would engage with at that age. I can try instructions if you don't know what I mean.

danni0509 make sure you've got salt after your extraction if you can find some. Salt washes really help. I hope you can sort out your glasses as well (I'm on my 6th pair so can relate).

DS has been asking for lunch since 9.30 today. I'm trying to focus on one hour at a time.

Thanks for this thread by the way helps to know I'm not alone x

@SinkGirl those abscesses you have had. Were they in the teeth you still have in waiting to be taken out?

The dentist has just called they have cancelled my extraction Monday as new corona guidelines from lunch time today state no fillings / root canals & no extractions. Only antibiotics.

I've got an active infection im just praying these amoxicillin work.

If not what the fuck do I do? Keep calling for more antibiotics?

How many desperate people is there going to be

I asked how long this will go on for she said she had absolutely no idea.

Yes, in the teeth still to be removed. I needed three courses of antibiotics - abscess on one side was sorted by one lot, abscess on the other the first lot (different drug) didn’t work so I needed a second but I’ve had no problems in the last 3-4 months. If you’re still feeling pain or swelling near the end of the course then call them rather than waiting like I did!

Unfortunately amoxicillin is the one that didn’t work for me but hope it does for you. There was another beginning with an M that worked both times I took it

Thanks sink

Metronidazole how ever it's spelt I know which you mean. I didn't get prescribed them today but my mum has given me 2 boxes from her stash plus I can ring and try get another prescription next week.

Bloody hell we have a bit in common don't we

That’s the one. Worked both times I had it, so it’s good you have access to some if you need it.

Indeed - are you Tyler Durden? Am I Tyler Durden? I need some sleep 😂

How’s everyone today?

DT2 is really struggling - a couple of days ago he was hysterical by 5pm and wouldn’t eat dinner (very dangerous for him) because he was tired, so yesterday he had a short nap in the afternoon and I let it happen. Sigh. He was awake until 22:30 last night and up with the birds again this morning.

Biggest challenge right now is my back. I really messed it up while pumping for the twins and it has never been right since but because I can rest on the days when they’re at nursery it’s been under control for a while. Every now and then it gets really bad and I can’t move, need a short course of muscle relaxants etc. Lugging them around every day has screwed it up and now I’m in horrible pain. No rest in sight so not sure what I will do other than take any opportunity to lie down and refuse to pick them up unless essential which should be fun!

I hope everyone is adjusting a bit - I feel less panicky about the situation than I did a few days ago which I hope will rub off on them!

The local authority have refused the placement we wanted because it’s too expensive. I am in absolute bits and have just (possibly inadvisably) sent the angriest email of my life (which probably still sounds too polite to be honest). Fuck this week, fuck it and then fuck it some more.

That sucks.
LA should be looking at needs first, costs second.