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.

So sorry OP, I though special schools/classes had to remain open. If I was in your position, I be phoning your son social worker/children services and say you are near a breakdown and he needs to go into respite. There no other choice.

You matter too OP.

No @ukgift2016 all the LEA special school,s in my LEA ( at least) closed during the last lockdown ,, respite is extremely hard to get even in the best of circumstances ,and what if every parent who has a disabled child phoned saying they needed respite ? It's not that simple .

I found your link to this post OP

You have my sympathies

I work in schools and teaching is more than educating it has replaced child services/ social services in many ways

I'm not sure about SEN schools but what do you do for the 6 week holiday?

Teachers are not responsible for your personal mental health

You need mental health intervention
Schools, teachers and educators are not there for you they are for your child and you need help.

Not Mumsnet hq help
Not teacher help
Not help for your child
YOU need help

No easy answers and I sympathise with you but an extend Xmas break shouldn't have you contemplating suicide. Most private schools have a 4 week break every Christmas. It really shouldn't break you down this much

"Most private schools have a 4 week break every Christmas. It really shouldn't break you down this much"

The fact that you have even mentioned private schools for children without severe disabilities indicates that you have absolutely no understanding.

I guess you have never experienced having a child who can never be left alone safely even for a minute. I guess you have never experienced watching your child in extreme distress hurting themselves for hours on end because they have no comprehensive of what is going on. I guess you have never experienced knowing that you will be kicked, bitten and punched at any point. I guess you have never experienced having 3 hours sleep at night for years. I guess you have never experienced the worry that your child will have to go into residential care because they or you can no longer cope.

"I'm not sure about SEN schools but what do you do for the 6 week holiday?"

And not knowing about sen schools should have told you you don't don't know enough to make a comment.

My son has SPD, I am EXV and have been off work shielding with my son since March last year, and I would completely agree about being forgotten about, and do not get me started on his school, lost all respect for his teachers after this.

You need mental health intervention
Schools, teachers and educators are not there for you they are for your child and you need help.

This is wrong on so many levels and if they don’t look at and work with the wider family they are failing everyone including the pupil

That poster in their eagerness to parent blame has missed all the posts describing the distress felt by the OP's child.

I'm so sorry for the hard situation you're going through OP. My grandma is a cater to my uncle, her autistic and disabled son, he's in his 40's usually we all chip in and help her, she usually has carers take him out to give some respite 3 times a week for 2 hours at a time but she's stopped everything because she's older and he's on immunosuppressants, she's worried and won't let anyone near them. But she sounds so close to breaking point when I speak to her. I phone her often, I take shopping but it's not the same. You have my huge sympathies

You have NOT been forgotten by me. I am so angry and sorry about what you've been through. I wish I could help you. Please get any kind of help you can. I hope for lighter days for you.

We had 2 phone calls, one of which was an annual review in the last lockdown (asd, adhd, anxiety, spd, hypermobility) . Told them in 2 separate emails that we aren’t able to access education at home this is despite getting 121 at school. Made zero difference and we were left to it for 6 months. It should be on a case by case basis, some children thrive by being taught at home and some will never come close to catching up. We also haven’t received any of our therapies since returning either - mainstream.

It’s criminal.

@sheworkshardforthemoney I have no words! Wow,astounded that you needed to go through many topics to find a subject to troll those less fortunate in a situation you clearly have no experience of.lets hope you're life doesnt one day flip on its head and place you in a life with very little hope.
@sleepyblueocean xxx

@sheworkshardforthemoney

I found your link to this post OP

You have my sympathies

I work in schools and teaching is more than educating it has replaced child services/ social services in many ways

I'm not sure about SEN schools but what do you do for the 6 week holiday?

Teachers are not responsible for your personal mental health

You need mental health intervention
Schools, teachers and educators are not there for you they are for your child and you need help.

Not Mumsnet hq help
Not teacher help
Not help for your child
YOU need help

No easy answers and I sympathise with you but an extend Xmas break shouldn't have you contemplating suicide. Most private schools have a 4 week break every Christmas. It really shouldn't break you down this much

Nice empathy bypass.

@sheworkshardforthemoney Sod off

What does your son like doing with his time?

Op I'm not in your position but just wanted to send some love your way. I can only imagine how hard this is for you and others in this situation. You are all so strong although you probably don't believe it, I really don't think I could do it.

I'll gladly back any petition that gets you all the support you deserve.

I work in schools

I highly doubt this is true seeing as you appear to have no clue about children with SN and/or SEN, you also appear to have the emotional depth of a teaspoon.

I'm not sure about SEN schools but what do you do for the 6 week holiday?

The six week holiday starts and ends on set dates. A child who has a need for structure and routine can be prepared for this ahead of time, with DS we have a calendar with the dates clearly marked and we talk about "school will close here" and "school will open again there". In non-covid times there are also support groups and respite care more readily available during school holidays, our local support group organises family activities and they also organise supervised activities where children can be dropped off for a fixed period and collected afterwards. There is no expectation that school work will be done during the holidays either so if my sons want to hide in their room and not speak to anyone, they can.

Covid school closures are unplanned and unexpected. They are open-ended either no clear end date. Support groups and respite are either suspended altogether or severely curtailed. There is an expectation that online learning will be completed despite this being difficult for children with additional needs to engage with. All of this can lead to an increase in anxiety for the child and an escalation - or development - of negative behaviours making their needs even more difficult to manage. Once the children do get back into school it is not the school they are used to, the routine and rules are different and the support measures they need in order to access education (e.g., via EHCP) might not be available or might have been adjusted, an unsupported/poorly supported child is not going to be at their emotional or physical best. This all has a knock-on effect for the child and their family.

Most private schools have a 4 week break every Christmas.

Good for them. This isn't about private schools though, this is about the lack of support for disabled children and their families during the pandemic when that support was already lacking before this all happened. The support got suspended but their needs didn't and now those needs are going unmet.

@sheworkshardforthemoney Most parents of disabled children cannot work becuase there is literally no childcare for our children in the school holidays. Many of our children do not sleep, many have complex medical needs. When our children are at home we are their carers. We do not have the luxury of free time or relaxing time with our other children because we are to busy caring for our disabled child or just too knackered to even put the washing on.
School has become our only respite since all other services have closed on us back in March.
My child is 16. I have to dress her, wash her, give her her meds every single morning and night. My friends children are all independant and I'm still carrying out tasks that ended for them when their NT children grew up. She will need lifelong care as she does not have the mental capacity to do these things for herself. Who will do that care? Me. My hopes and dreams for my future have been estinguished by the random act of giving birth to a child with disabilities. I love her dearly but she has made my life so difficult.

So how dare you swing onto this thread and display so little empathy for our lives. You haven't shown a single iota of understanding yet you arrogantly come here to chastise us for talking about our lives and how we are struggling. I could say more but it woudn't be in the spirit.
Jog on.

Brilliant responses @FoxyTheFox and @PennineSpring. I’m impressed by people who can remain so articulate in the face of rage-inducing ignorance.

@sheworkshardforthemoney I hope you aren't allowed anywhere near disabled people and their carers in your job. Your post attempts to present your heartlessness as "logic" but instead presents you as painfully, embarrassingly misinformed.
You must have very little understanding of mental health to think that the mental health team can really help with mental illness caused by life circumstances!
Furthermore most of these parents and carers, if you'd bothered to read, are already on antidepressants and getting counselling, but guess what? Until they get enough sleep and peace of mind, it's like sticking a plaster on a gaping head wound! So it's hardly a shocker when suicidal ideation bubbles forth with the least provocation? Clearly you have absolutely no lived experience of the crushing weight that some bear every day of their lives.

"I work in schools"

You are not a teacher or TA. A search makes that clear. So if you are in a school it is not (thankfully) working with children.

I agree with you @NotEver0 do many on mumsnet have no idea.

This is an open forum

I work in schools
My mum works in schools
My daughter attends school
My friends are in working in schools

You cannot expect them to open at the moment it is unrealistic

@sheworkshardforthemoney
You clearly don't work in a school dealing with children (thank god) but what gives you the right to blame the OP for this. Have you ever dealt with an SEN child? It's very hard work, not just for the parents but all the care givers.

@sheworkshardforthemoney

This is an open forum

I work in schools
My mum works in schools
My daughter attends school
My friends are in working in schools

You cannot expect them to open at the moment it is unrealistic

What's your role then? In another post you put you have a low paid management position hiring minimum wage workers... Doesn't sound like a school?