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.

mine is in school today but is not sleeping well and getting them up and out is really ahrd when I am constantly sleep deprived. last self isolation led to behaviour that was horrendous and depsite best efforts, dc was not sleeping until the early hours. I also have another child with asd and that one gets up early, and although reasonably independent breakfast wise, noise still woke me up/disturbed sleep. God it was awful getting them to school this morning, I have the other at home working, so while less disruptive, still not peace and quiet and stillneeds some supervision. (eg could not fuck off out to the supermarket say)

Dd is at school as well. There is no noticeable difference to how the school was pre covid tbh other than handwashing as part of the daily routine and masks in transport between sites. One pupil has chosen to stay home from her class of five but everyone else is in. It's like an oasis of calm there tbh.

DS2 paediatrician has got involved, his behaviour was so bad at school is September after no schooling since March that he needed medication just to attend. This was agreed that future lockdowns he would have a place unless the school was completely closed. This was after the school sending him home in December for safety reasons, with a guarantee of him returning in January.

my 4 are in.
i emailed the LEA with the guidelines asking what provision they were making, and said clearly i would not be left as i was march-july with all 4 of my disabled children with ECHP at home.
and magically the (2) schools gave them places the next day.
the guidelines are different to last time though and it was make the difference.
our family nearly imploded last lockdown..so shortsighted as this time the risks are higher i think to have them in school.....but needs must. i do think we are in for the long haul again.

Does anyone know if the lockdown exemption for respite applies to family who provide respite or is it only official respite? Usually my mum provides us with respite and will take one or both of our disabled DC to give us (and them) a break, when she has them she provides the same level of intervention and additional care that DH and I do. She will also take one or both overnight now and again, as needed, again to give us a break.

DS has always been a poor sleeper but for the last week or so he has been off the charts, he's dwindled down to around 3-4 hours a night culminating in him not sleeping at all last night. This is all having a knock-on effect with his mood, his behaviour, and his anxiety which then makes his sleep problems worse. My mum has offered to take him tomorrow night so we can get a decent sleep but I don't want her getting slapped with a fine for it.

Family respite or caring duties is fine, DS2 special school is asking parents to consider family/friend support instead of sending to school.

Oh thank goodness for that. I am going to sleep so well tomorrow night!

@FoxyTheFox I hear you. Ds is 25 and has slept through the night on a handful of occasions in that time. One of the biggest bonuses of separating from exh a couple of years ago is that most Saturdays he goes and stays at his Dad's meaning I don't need to keep a listening ear. Tbf even if this was contrary to covid laws I would still send him as the one night a week keeps me going for the other six.

So the updated guidance is that special schools to offer full time provision but and the inevitable but is that only is staffing levels are available and then it’s working towards full provision.

Special schools and specialist post 16 provision
We want children and young people in special schools, including residential special schools, and special post-16 institutions to continue to receive high-quality teaching and specialist professional support. This is because we know that children and young people with special educational needs and disabilities (SEND), and their families, can be disproportionately impacted by being out of education.
Special schools should continue to welcome and encourage pupils to attend full-time where the parent/carer wishes for their child to be able to attend. Special post-16 settings should continue to welcome and encourage students to attend as per their usual timetable where the young person wishes to attend.
On occasion special schools may encounter circumstances where they cannot provide their usual interventions and provision at adequate staffing ratios, or with staff with vital specialist training. In these circumstances they should seek to resume as close as possible to the child of young person’s specified provision as soon as possible. Pupil level risk assessments, which were used last spring, should not be used to filter children

and young people in or out of attendance, but could be helpful to prioritise the provision a child or young person can get if full time provision for all is not possible.

After a panic Monday when DS special school messaged to say they would be closing on Tuesday to make plans they messaged again Tuesday to say it was parental choice whether to send your child in.

I know of a few parents who have made the decision to keep their kids home but thankfully that means DS has a place. I've had messages from the school the past few days about how happy and settled he has been... which makes me sad in some ways as he is happier at school than at home but also means I have time for the relentless homeschooling of our 2 NT DDs who have very jam-packed homelearning schedules.

Also feeling very selfish as I love having time with the DDs without DS, it is more relaxed and 'normal' and everyone steps out of their caring role (despite being 6 and 9 the the are always keeping half an eye in their brother just like I do) the girls are such great company and it is rare I get to spend time with them like this but it makes me feel like a traitor to DS

So far D's special school are offering one zoom call a day ,messages on Dojo and a weekly welfare call, absolutely agree staff in special school,s should be treated the same as care home staff,they do personal care for a lot of pupils in complex needs school ,they really need the same protection

Today we got a doorstep visit y boy has no idea we are in a pandemic or that we are supposed to social distance ,so he saw his favourite Ta and ran up to her and hugged her and started taking her hand for a walk ,his school have brilliant staff but it's such a mess

@hiredandsqueak his anxiety is through the roof. At the moment he has it in his head that if he sleeps, he might die. Or someone might break in and kill him. Or I/DH might die. Or there could be a fire. Or his pet might die. Or his phone or laptop has a virus. Or he has a random pain and thinks its a heart attack. Or amy other disaster scenario you can think of. We try to gently explain that 11yo children don't generally have sudden heart attacks and that the reason he feels so stressed and has so many little pains is that he is tired but he won't have it.

DH was all "oh, Friday night and no DS, we could..." and I responded with "SLEEP!"

Ds just doesn't need to sleep. He can do a full week on twenty hours sleep and he is fine it's just me that is on my knees. It's easier now because he can, in theory, amuse himself in his room. In reality he likes to roam around so I snooze listening out in case I need to sort him out.

In the absence of any contribution to this thread from @mnhq, pp may like to comment on this thread: www.mumsnet.com/Talk/media_requests/4127719-MNHQ-here-wellbeing-impacts-of-the-pandemic-on-mothers-and-a-media-request

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Sorry everyone I've been quiet for a couple of days.been suffering from pain in my chest and extreme tiredness ,just really run down.bit better today,I'm glad,I cant do unwell!I've no time for it.Thank you for not forgetting this thread.
I too am so disappointed in MNHQ for going quiet on such an important issue,they seem to have taken the same stance as the government,to just ignore us!!Why are people in areas of influence so unwilling to help others in situations which they dont suffer?is it just that our cause isnt popular and disabled kids and their families are an uncomfortable truth theyd rather just ignore and not see??
We wont be hushed, I'm never going to stop fighting for my boy and every other disabled kid until their rights are just as important and equal to that of every other kid.We bloody shouldn't have to fight for anything,every kid should go through the same diagnostic processes and offered the same brilliant and best help they can to ensure they have a future and their parents too.There are far to many stories of mothers on the brink and taking lives of themselves and their poor children in sheer desperation because of being sorely let down.Then we are told lessons must be learned and be ohhh and ahhh ang say what a shame then forget!!
Please all parents continue to fight,its so hard I'm right in the thick of it,but we havent a choice.
In news about my sons school hes been given two mornings at a hub in his school.this seems like nothing but expecting absolutely nothing has meant it feels like a great something as itll be two mornings I can sleep or just sit down.
I hope you are all well, thank you for asking after mexxxx

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@MNHQ I’m guessing our kids aren’t cute enough or our cause isn’t ‘trendy‘ enough to help with?
.

Yesterday having not been able to wear the lycra suit he is meant to wear daily for 6 months DS finally got measured for a new one!

Now we have a 6 week wait for it to be made and then we have to wait for another appointment so they can mark up the position for his mic-key button then send it off again to be adapted!

So by the time we have a wearable suit it will probably by 9 months without one. His muscle tone and core stability have gone backwards massively, when he was in school he could no longer join in PE at all.

The delay in being able to get this sorted will quite possibly have very long term impacts on his mobility 😢

non sleeping ds is still bumping around.

@MNHQ you were going to look at this for your campaigns team, has this happened?

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Well ds teacher offered to post out some worksheets for him to complete 🤔
He can't write so I don't know how that's going to work 🤷‍♀️and he won't engage with school work in the wrong setting which they know.
You just couldn't make this sh@t up 😡

I have also noticed that unpaid carers are not on the new list for key workers whose kids are allowed places at school even though they were added to the old list in May. I've complained to my MP.

Unpaid carers and families of disabled people should be supported as much as possible.