To tell you what life is like with a disabled child?

[FlyingTigger]

Following on from the thread
https://www.mumsnet.com/talk/money-matters/5066331-do-you-feel-bad-for-receiving-a-high-amount-of-uc

DD is non verbal and has a learning disability. She’s 6

we co sleep which means I’ve not had a good night’s sleep in years (will often wake in middle of night, sometimes for 20/30 minutes but often for and hour or 2). I’ve tried sleep training but distressed her to the point of nearly throwing up whilst crying. Also a safety thing as will happily climb/go where shouldn’t. Won’t go to sleep independently and will often wake up or cry going to sleep

Not potty trained yet. Have tried but genuinely could not care less about pooping and peeing everywhere. Like couldn’t care less! Oh and also smears her poo. Will take off her nappy or stick her hands in and rub it on the carpet/walls/furniture. This means I really have to watch her 24/7. She’s clever in the sense that she’ll often wait until I’ve got my back turned to do it!

no sense of safety. You have no idea how jealous I get when I see children her age walking happily next to their parents. I could never let her hand go even for a second.

I cannot put into words the anxiety I feel about the future. Imagine your child not being able to tell you if they’re in pain or they’re being hurt. I’m a single parent and I wouldn’t even consider a new relationship due to how paranoid I am re new partner.

Things like the support they’re entitled-her EHCP took a ridiculously long time to come through and even that was a fight. It’s not perfect but I don’t have the strength to fight. Things like SALT and OT on the NHS is abysmal. Literally a few sessions and I could have got the information off Google.

Bangs head in frustration and often don’t know why she’s annoyed. Scratches/pinches when upset

Has broken countless tablets and phone and the TV!

Sensory issues so things like clothing will
often take off. I’ve walked in on her standing naked on the window sill

Loves to tip things out eg the fairy liquid/pasta/rice or a cup
of water

I would happily swap the benefits I receive as a single mother for her health. I receive maintenance from her father but would happily give that up for him to take the load off 50/50. He can’t and won’t.
I work part time but it’s very likely my contract won’t be extended as I’ve taken too much time off when she’s been ill (wont even take Calpol and can’t blow her nose!). Her school have a breakfast club and clubs until 4ish but that means she’s likely to have had very, very little to eat (it’s heartbreaking to see how she eats once she’s home-like she’s not had anything all day). There’s also the issue of finding staff for her during this time as she needs 121 support and I don’t think the EHCP will cover that. Then there’s all the school holidays to think of! Wtaf do people do during the 6 week holidays with a SEN child who needs 121 at all times??!!!
I do not think of things like career progression or changing jobs as I will literally take anything that fits around her needs. I’ve graduated with a degree and have two masters but they don’t mean much at the moment.

I’m sure I’m missing things out but I sincerely hope this gives you an idea of what it’s like
being a carer to a child with a disability. This is just one side. There are countless others dealing with disabilities or disabled children (all with their own unique challenges). I can’t even imagine what it’s like dealing with the above but x2 or 3 children.

I don’t want to read that other thread, I’ve read enough here. I like to think that the vast majority of people are decent and would happily agree to support the disabled. I think some of the comments by the current PM have been unhelpful.

I have one of those 'high functioning' AuAdhd DDs too and mine is an adult. She can't keep a job, because the pressure causes regular meltdowns and shutdowns. On bad days she can't get out of bed. It's led to some severe depressive episodes which include self harm and suicide ideation.
On a good day she is bright, brilliant and articulate. Nobody except me and her partner see the bad days. She still has bad days but fewer, and the bouts pass more quickly since we have all accepted that at the moment, work isn't possible for her.
She would love to be able to work but is currently on benefits while she gets over the burnout of recent years where she has tried to pull herself together and just get on with it.

When she can, she does some volunteering and she tries to contribute to the world in the best ways that she can. When she's very unwell she can't eat, take her meds or wash without support. When she's ok, nobody who doesn't know her would have any idea about any of this as she doesn't sit around in her pyjamas living off other people's taxes as posters on other threads would have us all believe. But she does need to keep a roof over her head and food on the table.

We're hoping that now she has an accurate diagnosis and no longer thinks it's a personality disorder, a character flaw or just general laziness, she can come to terms with what she is able to do, and work from there. But first, she needs to rest and recover from a hellish few years full of guilt and trauma.

Ed because I meant to tag @Albatrosssss

@Iwerbe I think there is a major issue in our society as all jobs now seem to be more pressurised and challenging. In the past there were jobs for people like your daughter.
I remember when I had a job in the Local Authority when I left school. I was really surprised that there were a few people in lower paid office jobs who struggled to do the job. I mentioned it to my boss who just said it was better they were working than claiming benefits, so as long as they were trying, he was happy. I discovered that was not an uncommon attitude amongst public services at the time.
Then the drive for efficiency came with targets and performance reviews, and all those people were forced out. I knew one man who never worked again as he simply could not do a proper job, but could do simple tasks and was happy to do so. He lived in supported housing until he died.
It was an informal form of supported employment. But all that has gone now.

Absolutely- it’s unfortunately a huge cost to the business. Had this conversation with my DH and his view is that you need to accept these appointments are a social responsibility rather than a business move. He employed someone who was physically disabled, made adjustments costing £70k and then they left within a few weeks. His needs were obviously personal to him.

You can see how that’s difficult to manage as a business.

@KeyboardWhinger which is why it used to be mainly public services that provided these kind of roles. But then they were told they should act like a business.
Access to work though will pay for many adjustments.

I thought it was supposed to be reasonable adjustments
Could it be argued that a small company being expected to make £70,000 worth of adjustments isn't reasonable?
Obviously different if its a huge global company

Yes - I do still see it in public service, but now it’s only charitable organisations that have the budget to pick it up. There is no budget for a moral compass which is sad.

Ive not doubt that, in turn, contributes to the needs of many disabled people who would thrive having a purpose and working.

I used to work with a girl who had mild LD at a convenience shop - she was given odd jobs like cleaning the shelves etc. She loved the role and was so enthusiastic about it.

It is a huge company - sorry I didnt mean to make it sound like it came directly from DH’s pocket. It is just an area he is responsible for.

I also love the parenting advice offered by those with no experience of autism

‘You need to try FiRm BoUnDaRiEs it will eradicate all challenging behaviours’

😂

I completely agree, that is not what I’m saying in terms of my opinion. I am saying the issue I feel is that it’s been in the media about over diagnosis, councils talking about too many of them, what is wrong, parents teaching eachother how to get a diagnosis. It’s not my opinion but I think this is the root of why people who don’t have sen children are saying things that they do.

Op your daughter sounds identical to mine. People just don’t understand unless they have lived it themselves.

I’ve given up trying to explain just how severely her autism affects her. People hear autism and think of Joe Bloggs their neighbours child who may be a bit quirky but who’s extremely gifted at maths.

When you have a child who’s severely impaired with learning disabilities as well it’s unrecognisable as autism to most people. When my daughter is rocking back and forth head banging I’ve been asked if she has a brain injury/damage.
Autism is described as a spectrum which is great but the flip side of that is there are far more functioning people with autism than non functioning and sadly they get forgotten.

I felt tired just reading your OP! I can’t imagine how absolutely draining your day to day life must be & not having another person to share the load either. DD15 is neurodivergent with possible ADHD & she has a lot of other problems which stem from being adopted & from childhood trauma so parenting her can be very challenging but I have my DH plus a network of great support/social workers. Is there any respite care available?

That sounds amazing and much needed

I haven’t RTWT but my heart goes out to all of you caring for disabled children. I have an adult child with SN so do understand a little. Thank you to all the amazing parents who although access state benefits to live, actually save the state millions for the care they provide every single day.

Sorry to divert the thread, but it looks like there are a lot of knowledgeable posters on here whose DC have a similar profile to my DD.

Just wanted to ask how you knew if mainstream school/special school was best for your child? DD is 3.5, non-verbal and awaiting an ASD assessment. The LA are pushing for mainstream but I don’t feel it will be right for her.

Also don’t know if she is high needs/complex enough for the special schools in our LA. We only have a few ARPs. We’re in the early stage of the EHCP process, the LA are carrying out the needs assessment.

I would visit them try and get a feel of places. Ask questions etc to see if you think they can meet your child's needs.
My son has always been in a special school ,but it wasent a cae of ,if you started in mainstream you stayed in mainstream, kids joined his special needs primary school.in all years
And BTW, the LEA will always push for the cheapest option ,but if yoy don't think mainstream is right for your daughter stick to your guns.

100% special school in our case. He's in class with 7 kids with similar levels of need. Five staff members to the class. He's been with the same cohort for years and they are all very familiar with each other now. He would be utterly lost in a mainstream classroom. And the work would go right over his head. His special school never call me to bring him home because he can't cope, they use all the varied means available to them on site to help him there and then. They have the expertise and confidence to manage him. When I leave him there I breathe a sigh of relief because I know he's safe and happy.

I do not see it in public services at all. Everyone has targets and appraisals. You have to deliver all of the job and often a bit more.

Surely you should be contacting your local social services for support e.g. maybe they could arrange respite care.

I think you are incredible and a testimony to maternal love. Could Citizens Advice offer suggestions about other care and networks you could tap in to? Are there support groups (even online) with parents in a similar situation? You sound exhausted and need a break.

I hear you. Single mum to 7 year old non verbal child still in nappies here. I work full time simply for a bit of mental respite from it all, but couldn’t do so without before and after school care from elderly parents who will soon be too infirm to do it, as he can’t access out of school care due to needing 121.

i receive around £500 a month in benefits for him. Of that, £200 goes on sensory integration therapy once a week, £240 on speech therapy once a week (no after school clubs or activities here! Just therapy), £50 on supplements to help with his chronic constipation.

And then somehow I also have to save to somehow be able to cover childcare for the summer holidays, which is £650 A WEEK. Yes, £15 an hour, as he needs 121.

id swap every penny for a son who could communicate with me and with a prospect of independant living, even just to once hear “I love you” or “thanks”. Or just to be able to walk down the stress and know he won’t run off or have a refusal episode and drop to the ground and refuse to move, sometimes for hours,

every.single.penny.

My DD is 5, she is exactly the same, except selective mute, We don't get anything more than DLA for her, but I don't begrudge others that do get extra benefits.

I know how hard day to day life is with a child with such high needs, it's very tough and exhausting. We try to live as normal a life as possible, we do days out and have done an abroad holiday with her, which had it's lovely moments as well as many extremely challenging ones. Although it's tough, we have to try and do things otherwise we would never do anything at all.

In terms of school holidays, school holiday clubs usually can facilitate one to one care if you advise them ahead of time so they can manage their needs. School holiday clubs can be claimed as childcare too.

Keep going and don't let the minority pull you down, you're doing great.

I work in the public sector and have seen it at my workplace. I’m not saying that’s across the board but I personally know of a handful of disabled people (both physically and others with learning disabilities) in meaningful employment. I know two work in our post room, because I have direct contact with them. But others I just cross paths with and don’t know their precise roles. So it does happen. Maybe not enough - but my posts were about my own experience.

@KeyboardWhinger Of course public services employ disabled people just like private companies. But now they employ disabled people who can fully do the job. Very different from what used to happen decades ago.

I’m talking about people with learning disabilities- they are my indirect colleagues, I’m not talking out my arse. I can assure you they haven’t been employed with efficiency in mind.