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?

I have 3 with ASD.... And a year old dog...

So far 3 are in school... But looks like only till Friday.. Easter hols don't start for another 2 weeks so it looks like a month at home for us.
Thankfully we have woodland nearby to burn off some energy fir kids and dog

Things will be interesting.

I have 2 with asd (4 in total) going to be a struggle as school is the only break I get. Being stuck in all day is going to be very hard

We are stuck in most of the time anyway as I can’t safely take my twins out on their own. But usually we get every other weekday at nursery so there’s a break. Think we are all going to go insane. I’m in the middle of appealing EHCPs and insanel stressed, of course the LA are using this as a reason why they can’t possibly make any decisions... I burst into tears picking them up from nursery today and I am not a weeper. It’s all just too much at the moment and we don’t even have the concerns of health to the same extent as others. This is just awful.

How’s everyone doing? There’s absolute mayhem on the EHCP groups on Facebook, with a lot of people misunderstanding the new guidelines and thinking they have to send kids in.

I am praying our nursery will still take the twins once or twice a week or I’ll be broken in a few weeks. Already had someone in one of those groups calling me selfish for even considering still sending them. Feeling really crappy today. And still radio silence from the LA on the decision about placement - any excuses about corona don’t wash with me, they’ve had over a month since we last met. Grr.

I may just be talking to myself here but just wanting to offer support to those who are feeling like me right now. Between the prospect of no respite for 6 months plus, and the corona bill’s shocking changes to EHCP rules and social care provision I’m a complete wreck. Sending hugs to anyone who needs them

Really feel for you! What changes have been made to the EHCP rules? You'd think any establishment worth their salt should recognise a need when they see it - labelling it can be tricky at the best of times!

I have decided not to send Ds to school because the lack of routine there and different staff would be more of an issue and if the staff working weren’t tube trained I would need to go in anyway so it would be pointless.

My biggest concern at the moment is he has historically had major issues with anxiety with regards leaving the house which we had gone a long way to overcome but of course now we have to stay in that could create a long term issue but we will have to see

Sirzy I’m exactly the same with DS, staff wouldn’t be trained for his tube either so pointless as I’d have to go in too and we can do his work with him better at home.

Not talking to yourself @SinkGirl many of us in the same boat.

Ds is off for god knows how long too.

School said he can go in as long as I let them know in advance so they can get his 1-1 support in. I got the feeling it was only in a last resort situation and I would feel such a cunt phoning to let them know I'm not managing (although they already know this tbf)

No idea how I'll cope, I barely cope with him on a weekend.

Plus I've got toothache now

Arrghhhh

X

Have one with ASD who spent 8 hours yesterday crying and screaming to go to the park. It nearly broke us. I have honestly never had such a stressful day as a parent. DH got up at 7am, shoved a ton of hand sanitiser in his pockets and took him to the park.

I'm dreading the prospect of 14 proper days in quarantine or a proper lock down. I honestly don't know how we will cope. He's too young to understand what's happening and he has such tunnel vision he can't be derailed from an idea once he's got it in his head...

Oh no not toothache! I have been waiting since October to have two teeth removed under sedation - my appointment last Monday got rescheduled for early April so now that won’t happen and I’m just waiting for the next abscess.

The COVID bill is a disaster and I’m hoping it will be challenged - it would basically mean that EHCPs are no longer legally enforceable, just advisory, and schools named in them don’t have to take the child. Also essentially repeals the Care Act 2014 so social care doesn’t have to be provided unless not providing breaches human rights which is a very low bar. And this could be in place for two years. After so long fighting for provision and being so close to getting it I’m feeling completely hopeless.

The nursery are expecting the twins tomorrow but I know we shouldn’t send them, I just don’t know how we are going to get through this. Having a huge flare up of ME / fibromyalgia right now and struggling to cope even with DH off for the weekend. Absolutely dreading the next few months.

Hang in there everyone. It all feels so bleak right now with so much uncertainty but hopefully things will settle soon.

Mines in a root canaled tooth (was done 7 years ago when I was pregnant) I had bit of aching over Xmas in it and forced myself to register with dentist in Feb (not been for 7 years!) he said rct was fine but needed a filling elsewhere so I paid (£105 for 1 filling in a tooth that didn't hurt) had several xrays all other teeth looked ok but now the rct is hurting again even though X-ray looks ok.

My teeth are a mess really, I've had 6 out over the years and numerous fillings and couple of root canals. If they all dropped out and I got false ones I'd be very happy!

I used to have to take diazepam (way more than recommended) to go for a check up, I'm not as fearful as that anymore, just more fearful of having toothache whilst looking after ds 24/7.

Do you suffer with your teeth?

I wear a night guard for bed for grinding / clenching and where my rct is (left canine) I've noticed on bottom where I wear nightguard there are scrape marks that would come from rc tooth, so I think I'm aggravating it.

(I'm hoping anyway!) I'll just keep taking painkillers and hope it settles.

Sorry your appointment has been postponed, hope you don't get any pain in the meantime.

I really feel for you sink but that’s because it’s a national crisis.

Is your DH in a position to work from home at all to help out a bit?

I really feel for you sink but that’s because it’s a national crisis.

Yes, I’m acutely aware of that. I’m not saying that things should be different, just discussing how I feel about it. Although I think the proposed social care and EHCP changes in the bill are an utter disgrace, if the govt don’t understand how LAs will abuse them then they have no idea what the LAs are like at the best of times.

@BatleyTownswomensGuild I’m sorry, that sounds so so hard. I suppose one positive for us is that our two don’t understand anything so they have no concept of there being a problem but one especially is extremely rigid and if we don’t go to nursery tomorrow things are going to go south very fast. He’s just smashed his head into the wall three times having a tantrum while the other is finding any crumbs he can and sticking them in his ear.

@sirzy yes he’s working from home but he has to work and it’s tough when they need so much care and supervision. Trying to work out how to manage things between us - currently having a rest upstairs while he wrangles them then swapping.

@danni0509 oh that sounds painful, I hope it settles down soon. I’m terrified of the dentist hence waiting months for sedation - if I could make myself do it i would definitely have done it by now. I agree, if I could wake up with no teeth and have false ones I would!

Have emailed nursery saying we we will definitely be keeping the twins home this week and to see how they are getting on in terms of staff / kids and take it from there. Worried they’ve factored in fees from the twins into their financial plans so I’ve offered to pay anyway to make sure they can pay the staff. I’ve said we may get to the point where we need to send them occasionally but we can work it around their business needs.

Have also just written up an email about the Corona bill to send to every relevant MP I can find. No doubt a complete waste of time but I have to try.

Down Syndrome child here with associated health problems, no autism but very busy with little sense for his own safety. His SN school is closed and head has refused to open back up even for children of key workers, this was due to an overwhelming response from parents wanting the school to be kept closed for the health of the children and staff.

I can feel your frustration @SinkGirl and I don’t know what to say except keep going, you will get through it. 💐 keep venting on here and I’m sure other posters will check in regularly. A thread like this will be needed over the coming weeks.

I hope nobody posts anything negative about ANY of the parents voicing their opinions on this thread, unless you have a SN child you are not entitled to an opinion in my view. You have no idea of the challenges we face daily.

Wow I didn't realise they'd done that. You're right. They may as well just do away with EHCPs altogether. Very few will pay attention unless they're enforced (the amount that are abused even before, when they were enforced, isn't small I'm sure). And as for social care complying to human rights I thought the idea was to ditch these after Brexit anyway. I get what needs to be done needs to be done... but some of the outcomes we're seeing do sound like a Tory's wet dream!

I have a 14 year old with profound autism and learning difficulties. He will continue going to his independent special school. We have no respite and no training in managing his distressed behaviour. We are already close to the edge of keeping him at home and are doing this to try to keep him out of needing residential care. He has already noticed the change of weekend routine and I've been kicked and punched this morning but thankfully nothing worse.

I’m so sorry others are struggling too. I think nobody really has any idea what it’s actually like, day in day out, with a child who has no interest in anything, let alone dangerous or violent behaviour on top, sleep issues etc. Before they started nursery I was on the verge of being hospitalised because I was so unwell, and obviously I can’t let myself get into that state again.

Our current portage outcome for DT2 is to get him to engage with an activity, toy or person for 3 seconds, 3 out of 5 attempts. It’s brutal. I see photos on Facebook of all my friends kids colouring, doing crafts, building forts, watching a film... everyone takes these things for granted and when they don’t happen it’s so hard to fill an afternoon let alone weeks on end.

@underhisi I’m so sorry things are so hard, you must be so exhausted. I’m so glad he’s still able to go to school.

@Sunnydays60 I put in tribunal forms a week ago - now struggling to see what the point of tribunals will even be if LAs don’t have to provide what’s in the plans and schools don’t have to take them.

Thanks Doris - are you coping okay?

Sending big bouquets of to you all. Happy mother’s day, eh?!

Bouquet right back at ya!

@SinkGirl I am coping thank you for asking, he’s a teen and the only behavioural issues we’ve had were between the ages of 3-6, big meltdowns through his frustration (non verbal) and at the start of puberty, I got a fair few punches, kicks and 2 televisions were destroyed in a month. Tv’s now have safety screens attached, metal toy cars bounce off!

He’s fairly mellow these days and I know I’m incredibly lucky that he sleeps well. Communication has improved through sign.

What you said about activities resounded with me. My son has never been interested in jigsaws, simple games, baking, books, colouring, messy play, sand pits, ball pits or crafts of any kind. We have cupboards of brand new games, puzzles, jigsaws, learning activities, I can’t give them away because I’m still hopeful that he will use them at some point. He will decorate cakes, play with play doh, loves playmobil and his mini kitchen. Other than that the only thing that makes him sit in one place for more than 10 minutes is the television. He’s very busy.

Yes, Happy Mother’s Day to all 🍷

Two HF ASD children. One is working hard on school work. The other broke me after two days. We are going to do educational things without pressure. I hope to try and keep up with maths. It was hell.

It is good that other parents here know what the consequences of a sudden change of routine and dramatic reduction of exercise in autistic children is.