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See all MNHQ comments on this thread

Original poster

Disabled kids,the forgotten Covid victims

361 replies

NotEver0 · 22/12/2020 19:42

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.

OP posts:
Mif4 · 22/12/2020 22:14

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

RandomUser18282 · 22/12/2020 22:14

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

Bence69 · 22/12/2020 22:18

Sending lots of love from a fellow disabled child mum xx

DeRigueurMortis · 22/12/2020 23:07

@Gobbeldegook

Well in a way we already have by @ MNHQ.

It just needs more people to @ them and make the same request to build up momentum or better still starting a thread asking for this.

Boulshired · 22/12/2020 23:18

DS2 is barely back at school as they can no longer cope, he has gone through all the respite providers. He was having problems before Covid but the lockdown and all the learnt techniques for accessing the outside world have deteriorated. There is absolutely nothing educational wise locally. I have always known he would need a residential setting but believed it would be my decision and I would need to fight for it. Now I am fighting that he doesn’t get placed in an all year setting hundred of miles away. This is quite dark times, two of his peers have already gone to a residential both much sooner because of Covid.

sweetkitty · 22/12/2020 23:20

@NotEver0 at the moment ScotGov have said 6th Jan for ASN and keyworker/vulnerable children in mainstream, 11th online learning, 18th everyone back. Rumours are this will be extended Sad if it is I hope our school stays open our parents were on their knees last time.

sparklygoldtinsel · 22/12/2020 23:30

OP I am sorry to hear about your very difficult situation.
For what it's worth I don't think you have been forgotten, it's just that it's a balancing act for those making the policies. There are harms both to locking down and not locking down. To closing schools or not closing schools.
At the end of the day it's about what will save the greatest amount of lives.

PandemicPavolova · 22/12/2020 23:31

Agree this needs dramatic intervention but also, those who are in care facilties 24/7 and whose parents can't get to visit them, I also worry about their safety and Winterbourne view situations. One way to keep non verbal people safe is to make regular visits..... Op good post, you are not forgotten, I hope mn can pick this up and help....

SparklingLime · 22/12/2020 23:40

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.

Original poster
NotEver0 · 23/12/2020 01:25

@MNHQ PLEASE use your power and voice to help our vulnerable children who desperately need routine,help us parents who are struggling in carers roles without a second to breathe,who have other children to care for.please campaign for us
Please keep this post going everyone ,let's try get change.

OP posts:
Charlie63849 · 23/12/2020 01:35

Was your child sen school closed op?

I have a son that’s very similar to yours and he was allowed in school every day through the last lockdown. He went full time as normal and he hasn’t had any time off...

I thought (and I could be wrong!) that kids with a ehcp were still allowed into school?

Original poster
NotEver0 · 23/12/2020 01:46

@Charlie63849 hi up north it's not been the same unfortunately. We dont have ehcp.ours were shut apart from key workers kids and vulnerable, ours kids are all vulnerable!they have blooming special needs fgs. Sorry I'm just so fedup of fighting a fight I dont want to fight and shouldn't have to.

OP posts:
BlackeyedSusan · 23/12/2020 01:50

poor you, it is very tough. I am surviving on slightly more sleep with a child who has asd but in mainstream. when they are in school it is reasonable, get time to sleep in the day and they sleep more. when they are not in school they can not access the online learning much, if at all, without meltdowns, they are not getting much exercise (virtually non if self isolating) and not fecking sleeping. no echp. I am too exhausted to apply (plus my own condition (diagnosed) and possible disability (assessment process) which make it harder to bloody organise myself) no ehcp no access to school.

ginandwineandbaileys · 23/12/2020 01:52

I'm single parent to three autistic sons. Lockdown nearly broke me earlier this year. I will not manage if it happens again. I have no support bubble, have developed terrible insomnia, so even if my sons sleep, I can't. Respite has fallen apart, because carers kept having to self isolate. Even when schools have supposedly been open for vulnerable children, they can't open because there are not enough staff to keep the children safe.
Plus getting food, with their sensory food issues is almost impossible. I've never had to work so hard to just get food before. All shopping has to be online, I can't take them to the supermarket because they can not understand social distancing, FSM vouchers have been useless for the same reason, so I've struggled on.
I just want to sit in a pit and cry most of the time, but who,has time for that

Cagedbirdsinging · 23/12/2020 01:53

@MNHQ please use your voice and power to help NotEver0 achieve consistent care for vulnerable children and exemplary respite for their carers .
Thank you .
OP , FlowersBrew , I take my hat off to you .

DeRigueurMortis · 23/12/2020 01:55

If you want to gain traction "you" (posters and lurkers) need to keep bumping this thread by posting support and @MNHQ

You need to keep the thread active and even "graduate" to trending.

BlackeyedSusan · 23/12/2020 02:00

oh and I am still up with them now. ffs. the other autistic one will wake me in the morning. one sleeps really well. the baby who wouldn't bloody sleep. the one who ran to a four hour timetable and slept reasonably well is rattling around the flat keeping me awake. Going to finally settle them right now.

BlackeyedSusan · 23/12/2020 02:02

oh god, lots of parents of autistic kids still awake at 2am.

hope you get some sleep gin. hang on in there.

Original poster
NotEver0 · 23/12/2020 02:10

@derigeur thank you for your advice,I shall bump this everyday forever if I need to,if it helps change things it would be such a relief to children and parents that it would actually"save lives"

OP posts:
DeRigueurMortis · 23/12/2020 02:17

OP you are welcome and Thanks for you and all the other parents in similar circumstances.

WartyWorry · 23/12/2020 02:28

Another bump and @MNHQ to get behind this issue

ASimpleLampoon · 23/12/2020 02:33

It is so hard. It's 2.20 am and my son who is autistic and has adhd is still running around and shrieking. He can usually get to sleep by 10 or 11 if he has school plus trampolining, gymnastics and soft play but there is nothing for him now. He has respite tomorrow but there's nowhere to take him and weather is shit so not even a park will be ok. He is fine going out in light rain but it will be a heavy storm. He should be able to attend school in Jan but I don't want to send hi! As he hates hospitals so risking catching covid is not good. I want to keep him home but it will break us both mentally and I can't afford fines or risk losing his place at special school. . Heartbreaking choices.

Original poster
NotEver0 · 23/12/2020 02:46

My son is also up running about not tired,unfortunately this is a very real daily reality for us,and for many other families in the same situation. Hence why autistic kids need routines and suitable stimulation based on their needs to help calm behaviours and to try teach them ways to cope.my son has absolutely no understanding, he however is happy at his school with all its special equipment and space.i feel so sorry for this little lad of mine,who is completely non verbal and must be so confused and frustrated. Last lockdown he peeled my arms raw and bit me many times when upset (something he only has ever done with me).

OP posts:
Original poster
NotEver0 · 23/12/2020 02:48

To all of the parents here sharing and suffering like we are,I hear you,let's push this thread and try create change, our children deserve it.
Thank you all so much for your kindness, its really helped sharing and knowing that I'm not alone in this desperate situation.

OP posts:
OhWhyNot · 23/12/2020 03:37

Op your situation and others on here is so sad to read

I feel many people have suffered that most for the public are not aware about. I work in MH residential setting it’s been really difficult.

While I understand restrictions are needed so is extra support needed for the many that desperately need it

When billions of pounds can be found to prop up businesses (which I support) etc why can’t money be invested in services to support those that need it even if it’s respite just something more is needed