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?

Ds is working on his 10,000 hours to proficiency in Minecraft PvP. He has about 23 hours left to go.

We are working on surviving, mental and physical health intact.

Ds (severe autism) special school is open but we are keeping him off as he has respirstory issues.

Its hard as also trying to keep 2 NT DDs educated shioe trying to stop him continually trying to kill himself. He has so much energy and needs little sleep and we can barely get out so he is climbing the walls

We bought an indoor climbing frame because DT1 has the understanding of an infant but the gross motor skills of an Olympic gymnast. He has absolutely bonkers. It has helped a lot (at least it has stopped him throwing himself off the highest piece of furniture backwards). What’s really breaking me is DT2 putting things in his ears - I have no idea why this has started (it’s been a few weeks now, no sign of infection or any issues), think it’s a sensory thing. He waits until I’m dealing with DT1 and then just stuffs whatever he can in there.

The lack of activities is what really gets to me, definitely. I don’t know what to do with them, especially DT2. Even TV isn’t working right now as whatever one likes, the other ones hates and screams.

I don’t really drink but considering taking it up as a hobby (kidding... mostly).

Solidarity to you all. You’re doing an awesome job. It’s going to be constant firefighting and little else but we will get through.

Thank you for this thread.

DP's older teenager will not be confined to the house. (ASD, very challenging and at times violent behavior.) We are now scared he'll be arrested and we won't be told because he's an adult.

If we're not told we can't let the police know and show them the paperwork. DSS won't say a word.

Catch 22.

@SinkGirl the answer is 2 televisions, portable size. I know a family who do this.

Might have to try this - we’ve tried DT1 with an iPad while whatever DT2 wants to watch is on, but DT1 still kicks off.

@TheLinerunner that’s so difficult. I wonder if, if you speak to a PCSO, a note could be put on their system? to you too

@SinkGirl I am officially awarding you a 🥇 you must have the patience of a saint.
I think I’m going to have to take a couple of days break on MN, I’m raging about the utter selfishness of another poster on a thread I’m on.
Maybe cabin fever is setting in!

Oh I definitely don’t! I promise. I am a grumpy stroppy mare much of the time 😂

I definitely have cabin fever. DT1 is currently running around laughing at nothing so he apparently does too, but I’ll take it.

Totally understand - I’ve had to stop looking at Facebook, too many photos of children’s art projects and too many alleged support groups for parents like us where people are being yelled at and called selfish and worse.

Sometimes I really hate people 😬

And now it looks like Ds May be in the 12 week high risk group! Going to be a long few months

Think the sen schools my way are staying opemn. But I do wonder how some of the more challenging children I know will cope. They thrive on Routine and need a lot of entertaining.

How’s everyone doing? I am bloody exhausted already.

Sink I'm exhausted stopping ds trying to kill himself doing one thing or another.

He tried to cut his tounge off with a pair of scissors this morning, bit a prit stick and swallowed a chunk of glue etc etc.

That school respite is the only thing that keeps me ticking along x

That sounds like hard work danni

We have had to do a lot of regulating activities today. He isn’t keen on doing anything set by school so not pushing that at the moment.

Oh god @danni0509 how stressful for you, I’m glad you still have some respite.

The endless months of this stretching out in front of me have really hit me today, plus the GPs are being dicks about my medication (long story but essentially I changed painkiller prescription just before this - I got issued a small amount with the idea that I would go back to the GP to establish how much I actually needed. Did an e consult asking them to just change it back until this is over so I’d get a month’s worth at a time, but instead they’ve just issued the same thing and same quantity which means I’ll have to go through all this again in 10 days time). Just want to hide under my duvet - really wish this had all happened when the twins were not mobile!

@sirzy did you find out if you’re on the 12 week SI list?

To be honest it seems like BJ is likely to announce lockdown tonight so think we’ll all be in that situation.

Sirzy i emailed ds teacher this morning and just said I'll do what I can ie fuck all and I'm just mainly focusing on keeping him alive for the minute 😆

She checks his online school account for the work he's done (which he cannot do anyway since he's like a toddler in most ways and doesn't access the curriculum) so I wanted to warn her in advance not to expect anything put on there from us. One activity was to draw a moon on a night sky, I got the white pen up on the iPad with a star lit background and ds coloured the full screen white, yep that will do. Submit 👍🏻 haha.

What regulating exercises have you been doing please?

Sink I haven't got any respite, I meant the usual school day is what keeps me half sane, haven't got that now 😆 I'm rocking in the corner like the rest of you! Haha x

Oh sorry I see what you mean. My brain is farting all over the place today. Ugh, this really sucks.

Corona bill duration reduced to six months so that’s a start

www.independent.co.uk/news/uk/politics/coronavirus-emergency-bill-review-boris-johnson-a9418236.html

Not sure if Ds is on the list yet. Not that it makes much difference at this point.

I’m not even attempting work today. Ds is currently watching frozen 2 wearing my coat which he got by ripping down the coat hanger off the wall

Today is going to be a long day!

Agreed. Just pulled a lump of fossilised fish finger out of DT2’s ear with tweezers. I don’t even know when they last had fish fingers.

I’m approaching the hysterical laughter phase...

I guess it’s emergency food for if needed down the line!

Hope the day gets better for you.

Do you think it would be ridiculous if I phoned gp and asked for medication? Anti depressants?

I've never taken them but I've needed them a while in truth, just put off making an appointment......

I wouldn't get an appointment now but could I ask over the telephone?

They won't cart ds away from me will they?

No of course they won’t! They offer them to me every time i go. I relented a while ago and took them for a few months but stopped as I didn’t see a difference. Any chance your GP practice has an online consultation service? Mine do, you fill it in and they either prescribe directly or call you to discuss.

Today has broken me. DH has just taken DT2 to bed after an hour of him screaming and refusing to eat (not good - if he doesn’t eat, he becomes hypoglycaemic so will now need to check his sugars overnight) while I sit with DT1 who’s wide awake. Trying very hard not to cry. I don’t know what to do with them - literally, I have no idea how to engage them. I don’t think people understand what it’s like when a child is not interested in anything. Luckily DT1 flits from lack of interest to obsessive interest so at least I have periods where he’s doing something.

Why the fuck did I tell nursery they didn’t need to go?

I feel absolutely pathetic for not being able to look after my own children for four days straight.

Sink I'm in same situation, on the edge. I've just told my useless Dh to get out and not come back.

In the last half hour ds has super soaked my bathroom and my Lino is squelching and the carpet is wet and he's broken my only pair of glasses I have left by smashing them off my face (which he's done several times before) so now aswell as my life being in tatters I also can't see.

😂😂😂😂😂😂😂 if I don't laugh I'll cry and I won't fucking stop.