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.

Right there with you OP. My eldest daughter is autistic and her sen school is a lifeline for me. Lockdown was awful, I dread it happening again. But she also has cerebral palsy which makes her slightly more vulnerable to covid so I have the worry. And then the fact that despite daily exercises her mobility has declined since the first lockdown. Its a nightmare

Definitely SLT would have looked at the profiles of the families and I know they spoke to every single parent in the first week of lockdown to ascertain what was needed and what we could accommodate with the more extreme curtailment to numbers back in March-July.

It was very difficult/ impossible to know which children would do okay at home. Some of our most ‘challenging’ pupils entirely surprised us and their families, doing very well at home. That isn’t denying that or mist have been extremely difficult. Just to reiterate that it would have been hard to know who to offer limited places to.

Were you not entitled to a school place over lockdown? I had heard it was available to children with ehcps.

Can you get respite or a partner, or a support bubble to help?

And to be fair my son is very challenging at one point he was the only child in his special school who had a 1:1 despite classes only having about 6 or 7 pupils anyway and around 3-4 staff members but he did surprisingly well during lock down and I was very proud of his behaviour it must be a tough decision.

It's shit. Dd has a mild physical disability. And part of the reason it's mild, rather than moderate in her case is because she was always able to access treatment and therapy when she was younger and it was vital. And even then, I paid for private physio because the waiting list was too long. I dread to think how many dc with her condition alone will have missed out since March with far reaching consequences, let alone every other condition.

@hibbledibble I can't speak for the Op but my son's special school was closed from march to September apart from keyworkers children and every child in my son's school has an EHCP .

I hear you OP. I struggled too trying to home school my older primary aged DC with a younger ASD child and continuing working full time from home. It did break me in the end as all our support fell away. No EHCP as they are almost impossible to get in my area, so no place in school.

My employer expected full commitment to working hours and still does. I will end up losing my job if it happens again.

There is not even acknowledgement that parents of disabled children have been utterly abandoned during covid. Let alone plans for any future support.

YANBU and you are not alone.

I completely agree. Despite the government saying SEN schools should stay open,ours closed

My sons school was shut march to mid August,eventually got twodays a week in the hub,from 10 till2.He has highest DLA and has social respite but since march those 7 hours a week im entitled to havent happened due to covid.ive been left to it.husbands worked throughout as hes the only breadwinner at home.he helps out as much as he can.
I'm sorry for all of you in my position,let down,angry,frustrated, exhausted, burnout is how I feel.

X2boys

Sorry to hear. My children's school had key worker children and those with ehcps for parent respite, but it is mainstream so this was not many extra children.

I would hope that a SN school would take children for respite from the parents who require it the most.

[quote x2boys]@hibbledibble I can't speak for the Op but my son's special school was closed from march to September apart from keyworkers children and every child in my son's school has an EHCP .[/quote]
Same.

In mainstream, children with EHCPs were prioritised but at my sons SEN school, all children have EHCPs and all are vulnerable but they couldn't take everyone so only took keyworker children. It was bloody awful. My son can't do remote learning so he just didn't get educated after 2 years out of school already.

I haven't forgotten.

I left a role just before first lockdown which involved working with children like your son. I was gutted to leave, but had to for family reasons. Lockdown was only a few weeks later and I haven't seen or heard from my kids since - I'd usually see them out and about, and would have caught up on their progress with the girl who took over, but the role hasn't started up again since March. I knew many of those kids for years, so had a fair idea of their very individual and complex needs and requirements, and not a day has gone by since March when I haven't thought of them and their parents. I can't imagine how difficult it has been, and I worry so much about the children's progress during lockdown and how stressed and exhausted their parents will be with no school, no respite. It's been a disaster for those in your situation. I am so so sorry, and I wish I could do more to help.

My sympathies OP it’s so difficult when school is the only respite parents of children with disabilities get abs that’s snatched away from us too. I have no advice only empathy, I’m sorry.

@hibbledibble all 4 of my children have ehcps....and full time 1-1 support.
the 2 placed in private school simply could not attend a closed building - so had online school instead with their 1-1 on the end of a computer
the other 2 had to go to through the LEA 'panel' which decides which child needs the place and for how many hours......despite their ehcp and full time 1-1 being paid for their care...(and sitting at home the entire time saying she'd be happy to be at work) the 1-1 phoned us once a week from her house instead....

so i do think the public genuinely think all these sen kids have simply gone to school......they haven't...i wish it was that easy!

Accidentally posted too early.
My boy's school closed except for the kids with key worker parents. I struggled so much with my boy and his twin at home. I couldn't do any home ed with his twin and I had one boy showing signs of depression and another with signs of anxiety. I was diagnosed with severe depression and anxiety as a result. In the end I got a referral for a disability social worker and she managed to persuade his school to let him go back 3 days a week. He went back full time eventually but he had regressed considerably and the damage hasn't been reversed yet.
Twice he was sent home for two weeks due to someone in his hub getting covid.
Autistic children need to have stability and continuity

I think the Government forgot about special school,s when they said children with EHCP,s could still go to school @hibbledibble and tbh I was reluctant to send my son to school as he has a rare chromosome disorder and whilst he's a healthy child other than his disabilities I didn't know how COViD might affect it .

I’ve not forgotten about you OP
I work with children like your son everyday although it Scotland where we don’t have ECHPs etc. During the lockdown we had hubs set up for keyworker children and those most vulnerable this including having a disability. The only problem was this was in another school not set up for severe and complex needs. Several of our children could not attend which meant they went the whole of lockdown with no respite. I wish they had opened our school and I would have gladly worked there. Our children need routine.

This time I believe right now ASN schools are opening on the 6th of January with parents deciding whether to send their children, which in my experience means most will be in.

I know how you feel. It's so hard. Do you have a local carers group that can help? We have Durham county carers but I'm sure there's similar schemes across the country. They offer advice, support, respite, bit more than anything a listening ear xx

@NotEver0 you sound exhausted. My DS works in a residential home for older teens/ young adults with ASD and other issues. He say's the residents and their parents have been treated very badly throughout the pandemic. Some haven't seen their parents since March. It just isn't spoken of but is as least as bad as the care/nursing home situation for older people.

I'm so sorry OP.

When they announced the priorities for those receiving the vaccine I was very sad to see no mention of teachers and pupils in schools catering to SEN children where masks/social distancing is virtually impossible.

I obviously applaud frontline NHS being prioritised but also think think teachers/pupils in these circumstances are just as important.

Aside from the impact on parents like yourself, many children with SEN need/favour/benefit from routine and regress behaviourally without it.

Parents (many who have other children also to homeschool) can't possibly provide the requisite structure nor the facilities the schools can.

It's been widely reported how very difficult it's been for families trying to cope with children with 24/7 needs at home with no support/respite, so it's pretty galling not to see the vaccine targets "early doors" to this cohort of the population.

@sweetkitty we've had letters stating 18th of January at moment but now hearing that this may be extended

OP perhaps it's worth asking @MNHQ if they'd consider starting a campaign to get the Govt to prioritise children and teachers attending/working in SEN schools the vaccine?

I could have written this post, feeling the same tonight. This time around if it happens again we won’t have care in place at home.

@DeRigueurMortis

OP perhaps it's worth asking *@MNHQ* if they'd consider starting a campaign to get the Govt to prioritise children and teachers attending/working in SEN schools the vaccine?

That's a very good idea. How would we go about that