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.

OP, I'm here in Ireland and I want you to know I have not forgotten. I think about you and people in your situation every day and if they are worth anything, my positive thoughts are sent to you

@Edel2019 I love people like you who read this thread and have no experience but have all the empathy and compassion to support a cause which affects others,thank you, you give me such hope.

Sorry haven’t read all these threads and sorry that children and parents have been so let down. Just wanted to say that if people do start feeling desperate call your local Children’s services department. tell them you are struggling and they have a duty to provide support.

I am not a parent and agree that this group has been forgotten. I’ve seen/heard quite a bit generally on schools. Also on children or children with parents who are vulnerable to getting Covid.

All I saw on the media was that vulnerable children can go to school. I haven’t heard about lack of provision or extra support for schools such as additional PPE or help with more space where it can be used (children will be able to cope) being freely available.

This is terrifying me too. I have 2 kids with learning disability and dyspraxia in mainstream primary in Scotland and they both have full flavour and full time audited hours 1:1 support in school. We were not offered school places during last lockdown. Apparently the criteria to give a vunerable child place would be “ child more at risk at home than in school”. My pride wouldn’t let me say officially that I felt my children were at risk at home with me. But the whole thing nearly fucking broke me. And that was in spring/summer where we could go outside. Fucking winter lockdown??!! I don’t think I have the strength. Already had no respite atall from family or social work/ clubs/ agencies for the year. Already exhausted. I hate my life and increasingly am beginning to hate my innocent children because caring for them both simultaneously is too much for me. I already drafted an email begging for vunerable children places , saying I think they are more at risk at home this time, which breaks my heart. What mother wants to admit they can’t keep their own children safe!??? Please help @mnhq please

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My dd was due to be seen for a routine appointment with her spinal surgeon as the first lockdown started. Her medical condition means that she was also shielding between March and August, and just did another month too. The things that we do to keep her active and well were all closed. Result? Her mobility and health have conked, along with her mental health. When she eventually had a phone consultation at the end of October, they ordered an urgent MRI scan but the registrar filled the request form in wrong, and it's taken another 2 months to sort this out (will Covid be used as an excuse for this administrative error that has left my daughter vomiting in pain, I wonder?) The MRI is next week, let's see how urgently they say they need to operate and how long it will be delayed because of Covid.

@MNHQ bumping for relevance

Hi OP, just joining this thread in support of what you are trying to do (also agree with the PP about carers allowance through the pandemic but that's another ranting itself).

I have a 14 year old DD with CP, wheelchair dependent, gastrostomy fed and non verbal but cognitively advanced. From March 16th to start of term in September she had 6 days in school (special school). She has an EHCP and a social worker so should have been in school full time but her school said it was closed to all but children of key workers, we were left with nothing. Online learning is not appropriate for her and her peers and what little the school provided was only after weeks of pestering.

I am exhausted. I'm utterly exhausted. My mental health and physical health (all the extra lifting to do!) is shot to pieces. I've gone from having a small break each day of 2/3 hours whilst she was in school to 24/7 with no increase in the lovely £60ish per week of carers allowance.

Sending strength to all other SEND parents.

To all of the parents on here supporting and keeping this thread going,thank you.To all of you suffering,struggling with the demands of doing it yourself when supports should be in place I stand with you.We should not be ignored and forgotten.

So sorry yo hear that @beldaran

I think so many people are totally unaware of how much parents such as yourself have had to deal with.

The "headlines" about keeping special school open etc just don't reflect the reality

Indeed it doesn't ,I'm just hoping and praying there is a contingency this time to keep special school,s open.

I've cross threaded to this:

If the schools close there should be no pretence that they have switched to "online learning". www.mumsnet.com/Talk/coronavirus/4119612-If-the-schools-close-there-should-be-no-pretence-that-they-have-switched-to-online-learning

Posters here might want to to share their experiences and also direct them here.

Thanks @DeRigueurMortis. I can’t look at any of the “should schools close?” threads, because of all the sincere parroting that vulnerable children will be provided for, and the accusations of “teacher bashing” if you suggest otherwise (as if it has anything to do with teachers themselves!)

I feel stuck between a rock and a hard place at the moment. DS has two much needed appointments in the next two week a test and a measurement so neither can be done virtually. I am petrified sending him back to school because of the risk of then having to isolate again and miss the appointment. But he needs to be back in school.

He is CEV too which adds to the confusion!

I think I can’t do right without doing wrong!

Just seen this & giving my support.
I have a 13 year old daughter with a rare chromosome disorder,she has severe learning disabilities & is non verbal,so I totally get where you're coming from. School holidays are always very hard for me,but it's been even harder in lockdown. It's been a challenge to my mental health.
I also work as a TA in a special school with a class of autistic boys with challenging behaviour's & totally get how hard it must be for their parents at this time.
We have been completely forgotten about by this government & will continue to be,I think. The latest news on choosing who should receive intensive care treatment,as hospitals are so overwhelmed,fills me with dread. I don't even want to think of my daughter or any of my pupils in that situation.

I also work in a special school and you are not forgotten by me! I’m fully expecting to be back at work as normal next week, though I’m avoiding reading any of the speculation. I’ll wait and see what the official line is, later. I know my head will do everything he can to keep children at school.

Also giving my support op , I too have a disabled child .
I'm keeping everything crossed that my son goes back to school as normal next week he needs it I need it .
I'm on the edge already with the talk of lockdowns that would just send me over .

I want to give my support. I have a child with PWS and autism. At the start of lockdown the education unit (attached to mainstream) contacted us to say that although he could still attend (being quite clear that he would be 'better at home') they moved the facility to another school (schools in the same academy chain) which was open to key workers. So an unfamiliar building, unfamiliar staff, different routines - only one child from his unit managed to go. This left my son at home (with me teaching on line from home). Not as stressful as many of the posts on here but wanted to add mine. I also wanted to add that this 'specialist unit' made parents feel that they were falling short if they didn't look after their child at home during lockdown - it was as if they made it as difficult as possible to access the support. We had a full lockdown of a fortnightly phone call to see if we were 'okay'.

Just adding my support. I think this is a vital issue for @MNHQ to address urgently. I truly hope they look at this thread and comment.

to all of you in the thick of this. I used to work with children with SN - I absolutely loved it but it was an eye-opener as to what some parents have to cope with. Most people really don’t have a clue.

I haven't forgotten @OP - let's keep this thread visible.. I have a DS with ASD/PDA and SPD. His needs sound mild compared to your DC's and I still don't think I'm coping very well with him. The single most useful thing I can do for him is to be calm and positive but I can't even do that as everything just feels so hopeless at the moment. We'd definitely not get a school place if they closed. I can't imagine being in your position- you sound like a super-mum. I doubt @MNHQ will help, we're not a fashionable cause or one that can be easily monetised.....

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Has any information come out about special schools? I’m guessing not as heads have only just heard the restrictions today. Thinking of you all.

I know exactly how you feel.

My ds is 20 and he is Autistic, has severe learning difficulties and is also non verbal and he usually goes to day services 4 days a week but hasn’t been there since March.

His lovely day services started a phase return for their clients starting with phase 1-3 depending on how severe their needs are.
My ds was put in phase 3 which they were going to try and implement at the beginning of February 2021 but it seems now that it will not happen until he has the vaccine.

The only time we have ventured out with him is when we go for a walk in a local forest and the highlight of the week is when we do our click and collect shop, bless him he gets sooooo excited because he knows he’s going out in the car

While we get regular phone contact with his day services to make sure were all ok, but what I’m really upset about is that we’ve not heard from his social worker at all, our old social worker retired in December 2019 and we still don’t know who his new social worker is and have had to contact social services as they will need to reinstate his transport when he resumes day services, I’ve left messages and a month in I’ve still not heard anything, we just feel abandoned quite frankly.

That made me smile @eggsandwich ,my son's ten he's non verbal too severe autism etc ,he also loves going out in the car he gives me his coat and the car keys