Disabled kids,the forgotten Covid victims

[NotEver0]

I barely made it through this year coping with my severely autistic,learning disabled son being at home for the best part of it due to Covid. I struggled desperately without him at his much needed Special needs school and many a time in my darkest darkest moments thought it would be easier if we both just died..
I cried tears of relief when he eventually went back in August and went to bed everyday as soon as he left for school as I was so so exhausted, He barely sleeps and never sits down.He needs 24 hour supervision and self care assistance with everything.
Now it's happening again and I just don't know how to drag my mind and body out of this pit of dark despair that I'm fast hurtling into.I know I'm not alone doing this,its just so many things have been ill thought or given no thought,nothing seems more important than bloody covid.

Just wanted to add my support to OP and others on here. I am waiting nervously for DD’s special school to contact us to confirm she will go back on Monday. I’ve had to give up work so I can be at home as all our usually support for her has gone : external clubs and PA help in holidays. She was also off school for 4 weeks last term due to positive tests in her bubble.
We carers all on our knees yet no-one at Government or Council level cares.

I’m hoping we get the message that school is resuming as normal for DS
He’s 13, has asd /sld and has sensory processing disorder
Lockdown in the spring and summer was just about manageable, lots of long walks in the glorious sunshine and he was mainly ok doing colouring sheets/glueing and sticking activities, but it gradually took a toll and he got more and more screen time the more exhausted I got
His special school went back in September for 5 days and shut down for 2 weeks, luckily he’s been in until Christmas break
As usual, he’s been totally overwhelmed and over stimulated by Christmas - he’s been so unpredictable, his totally lovely self at times but also trashed his bedroom, attacked me and Dh countless times, has developed horrible grunting tics, has slept for only 2- 3 hours per night and is currently calming down after spending half an hour spitting up his bedroom room walls whilst letting out ear splitting shrieks
Him being in school is the only respite we have

It is absolutely abhorrent that heads only find out these things when the rest of the public does. I mean, come on. I wonder how many will actually sleep tonight?!

I’m going to put my work laptop on in the morning and check my emails, but I’m still expecting to be back with my class on Monday.

@SlipperySlope99 - That sounds tough. Does he have siblings?

Hello everyone, so very grateful to you all keeping this thread going and relevant, hopefully itll gain traction and be pushed into the forefront of media.
I sorry to read so many of you are struggling like me,really breaks my heart,especially those of us who rely on schooling for our kids for a form of respite when there is no other respite from services or family on offer.its so bloody tough.
I've had a really trying and exhausting day,my son wont stop climbing every surface and verbally stimming at the top of his lungs in between running to the front door and banging it furiously with his hands and head to go out,he doent understand his bus isnt coming.He has no voice or comprehension.I cant even take him out,he runs away and wont hold my hand and takes to lying on the floor every few moments. We are totally imprisoned, the freezing icy weather has made it that playing in the garden isnt an option either as he climbs and will hurt himself by slipping. I'm trying my best but hes barely getting any stimulation or exercise to tire him out,so hes full on full of energy.Currently he is running around my bedroom and ive locked us in so he diesnt run out and wake my other children.hes hyper and happy and keeps on pushing me out of the bed and climbing all over me and jumping on me from standing position off the headboard.Hes had his nightly medication, sadly it's not working as effectively any more as hes been on it for years.tonight we will get no sleep,this is my reality our life.
My poor husband who helps so much is suffering now with nocturnal panic attacks and is in a real state,hes trying to brave it out for me but hes so done in,its all taken its toll.
I keep thinking somewhere on the wheel of lifes fortune surely surely after 10 years it must be time for us to catch a break!,
Sending such good thoughts and wishing you all peace.
@MNHQ please remember us m,please push for us to get the support we need.

This holidays has been hard for my severely autistic DS, as it always is. Christmas is very overwhelming. He just roams around the house breaking things, swinging off banisters, throwing things down the stairs etc.

He is bored, he cannot do any of the things he would usually do to get his sensory needs met (swimming, trampoline Park, soft play, handipac he usually has at school) so he is finding other ways to get that feedback which is dangerous but what can we do 🤷‍♀️

I'd be happy to keep my 2 neurotypical children home and school them here if it meant that the special schools can stay open. Mentally I don't think I can do any more lockdowns with him. I'm exhausted and frazzled, my house is trashed, there is no point sorting it until he goes back to school as if I try to sort 1 room he will trash another.

We got through lockdown 1 by the skin of our teeth and with probably long term effects on both my other children's education and on my mental health. We only got through it due to the nice weather and having a small holding in which DS could run around, swim in the river etc. I can't do that at this time of year. I'm worried and scared and so bloody tired.

Special schools and day centres etc need to be kept open at all costs. People can do without the gym, having their Beauty treatments, doing their football club etc and most NT kids can be educated to some degree at home.

I don't think I'm selfish in saying that keeping open health care, supermarkets and special schools/ respite open should be the biggest priority. Parents carers already do so much with 0 respect or recognition

@BrutusMcDogface
No, he’s an only child and is absolutely adorable and we cope, mainly, even though we are hanging on by our finger tips at times
He enjoys school and they bring out the very best in him, it’s the only place he interacts with other children and has friends
We’re lucky that he has not regressed during the lockdown, but know so many other children that have, as they totally cannot cope with the changes to their lives and routines that the lock downs have brought

@SparklingLime

Agree it would be an excellent idea for *@MNHQ* to look at the whole issue of what is happening to SN children and their parents during COVID.

Agree. Come on *@MNHQ* 👍

My heart goes out to you, OP. My year 8 ds with asd will be offered a school place under a section 17 and he has an ehcp. But how do i make him go? After the first lockdown he became a school refuser. Now if I send him, he will realise he's one of a handful of kids and won't want to go in for a second day. We desperately need the routine of school. Any suggestions on what hat can I say to him to make him go in??

Another one with you . We had finally got DS into the right school, he was happy, settled and make great strides with communication and emotional regulation. From a totally selfish place he was also sleep through past 5! The past year has obliterated all his progress and he's even gone backwards. School don't recognise him. I worry that his placement will not be able to continue once things go back as he will be too far back to catch up.

He is destroying the house. My parents who have been our lifeline are struggling to cope. Everything is looking so black again abs out of all of us no one is suffering more than DS and I can't make it better.

DH and I both has full time roles in front line NHS so I'm getting it from all sides. I can't face another 2020.

I'm not a parent but really feel both children and adults with disabilities have been neglected this year. If there is a campaign from @MNHQ Id be more than happy to help support it whatever way I can

Totally understand this. My disabled son is a young adult and at a SN college. Hes clinically extremely vulnerable and latest email from the government yesterday is that CEV adults should not go to school or college.
Hes at a special needs college in a class of 5, 3 of whom are at home and it has been a farce up to now. This is probably ds's last year at college and I am trying to think of a polite wah to tell then to uo their game!! (Hes been timetabled for classes on teams and tutors arent sending links, arent turning up and then telling him off if he rings up to find out what he should be doing)

Agree @Coppercreek but you only have to read threads on here about what people really think about children with severe disabilities ,and all the people who just won't follow the rules ,on a lot of COVID threads people seem quite willing to sacrifice the elderly and the " vulnerable" it's sickening ,so I can't see some people willing to give up the gym , hairdresser,s etc so that special school,s can remain open

We are definitely back on Monday, despite being tier 4. I hope you are all able to send your kids in.

@eggsandwich All very best wishes to you, and thank you for your word picture. Despite the difficulties, you bring a smile at the vivid image of your DS being so thrilled at the weekly shop!

What country do you
Live in could you ask that your child attends school with the key workers ?

A little bit of good news, carers of disabled people will now be included on the priority list for the covid vaccine, under footnote 3.

www.gov.uk/government/publications/priority-groups-for-coronavirus-covid-19-vaccination-advice-from-the-jcvi-30-december-2020/joint-committee-on-vaccination-and-immunisation-advice-on-priority-groups-for-covid-19-vaccination-30-december-2020

I have 2 children with complex needs. The youngest is extremely vnerable but like most kids with complex needs he has been officially removed from shielding. But he has been hospitalised 5 times since Sept for chest infections and been extremely ill. No way can we risk him getting it so we have been forced to keep both at home . We have no support and my dh and I have had 24 hrs off since the start of march. They need round the clock care so I am often up a lot at night as well as caring all day.
We are exhausted but are not due our vaccines for several months yet apparently and if they are not going to vaccinate the children then nothing will change for a v long time yet .
Hospices and respite have been closed when needed the most and it is relentless. I really feel that families of complex needs kids have been completely forgotten about throughout this whole pandemic. It isn't as simple as saying just send them too school. Believe me we would love to send the 14 yr old who has autism and challenging behaviour along with complex medical needs and severe developmental delays and he did ho for a few weeks when numbers were low in sept but his school has had several outbreaks and we are tier 4 so just cannot risk it again. It sucks to be honest but we are just plodding on as best we can day to day .

@FoxyTheFox
Just seen your post ! How do we get added on the priority list as I rang GP the other day to ask about this but they said you can't do anything other than wait your turn. We are mid50s and one child is fostered so we don't get carers allowance so we wont be picked up that way ! We have been told we will be called between end May and end of June which means 6 months more of this isolation.
Does anyone have any advice to help?

If you are a carer for someone then you should be registered with your GP as such and be contacted by them for vaccination in the same way you should be for the flu jab

Exactly as @Sirzy says, your GP should have it noted on your records that you are a carer. Also if you care for a child/young person then the GP should have a copy of their EHCP on their records.

@Sirzy
@FoxyTheFox
Oh well hopefully I can ask them again now then and I might get somewhere. It will be a massive weight off our shoulders once we get it but our GP is not a vacine centre at the moment apparently so hopefully that won't be an issue.
Thanks for the info .

@FoxyTheFox fingers crossed then this hits Wales soon! my GP hasn't even started on 90s yet!

Well our special school has just announced that they won’t be opening!
They say this is based on the action some unions are taking in relation to safety in school but my understanding was that this union advice was NOT for special schools. There is no way there can be social distancing, mask wearing etc at my child’s school and no way there can be any remote learning so looks like we are alone up shit creek yet again!

@boobybum Noooo!!

Where do you live, roughly? I’m sorry to hear this!