u/GroovingPenguin

I am very tired and truthfully don't know how long I can keep doing this

I am partially deaf, autistic and physically disabled yet i seem to be the problem

We've had meetings and requesting reviews but they take time and I feel I'm going up the wall while waiting

How long do I give for responses?

So far I have had:

No acsess to my classroom, because the lift was broke before I started (wanted to put me on my own)

The Teaching assistant repeatedly laughing, giggling and whispering despite being reminded I'm hoh/deaf

Heatstroke

My tutor lying about knowledge of said EHCP

My tutor also refused to support or accomodate me without a plan

No personal evacuation plan despite being on the fourth floor

The Teaching assistant having a go at me for asking for more support

Harrasment from other students

And this doesn't include the various meltdowns I'm having,the snarky comments from other staff/students either.

They fixed the lift eventually but proceeded to not tell me as everyone ran upstairs and I couldn't get it working so I was on my own. (Security needed)

I cannot even get permission to get upstairs on my own..I have to "wait for staff"

Edit:

I am being viewed as completely incapable of anything and I'm at my limit I'm just so broken

My target set by the tutor was to "Make choices indepdently"

..I'm a full grown adult who pays bills..

It's a long story but local NHS won't provide appropriate equipment due to "criteria"

Private assesment occured and was found to be needed,a clinical letter was written and provided as evidence

La contacted a NHS provison of what exactly we have no idea and why

Which was promptly rejected as they seemed to be pediatrics and only take under 16 (Op here is 18+)

Any mention of it now has been removed from EHCP and provisons and that the LA will not fund it,to go to adult social care

It falls under a health need and a provision needed to acsess education so how can it be up to social care to fund..?

At this point they promptly deserve the slowest most awkward clap possible

Well done Nhs for the absolute failure for the 50th time

I waited 5+ months to see a geneticist,take time off school work ect for the appointment

I get in the room and within 5 minutes I'm told they will not test for the condition I was referred to or anything else as the variant officially is a vus.. despite family being diagnosed

Its a vus because it's so rare there's little to no evidence but any that exists is connected to the condition or concides

BUT THEY HAD 5 MONTHS TO FIGURE THIS OUT

So nobody can ever get diagnosed in the first place

This is a constant thing and I am tired of it

I am smack bang in the middle of mild and moderate at 45db

Everyone is classifying it different but I keep being shortened to "Mild" (context,I have moderate gain)

Today I started a new college and significant difficulties arrised,sports halls giant classes ect (help,50)

I spoke up and got told repeatedly don't worry,it doesn't matter ect you don't need to hear

Clearly I deserve the right as everyone else so I went to the head of disabilities office to set it straight

No accomodations were ever put in place because I'm mild,the teacher of the deaf was never contacted or involved despite it being in legal paperwork because I'm mild and don't meet criteria for assistance

So I am expected to sit in a class of 50 students and lipread while the teacher spins around like a yo-yo as I'm not deserving of help

I'd like to cry

Has anyone else been through this what helped?

And I also have no idea what to do with this information

Suspected umn disorder so cerebelar signs are within normal/expected technically (just ticking off that list..)

But like..what happens now,go to GP..document ect?

So I've always been in the world of disability but I've never gotten to the point of genetic testing myself

So I have absolutely no idea what to do,or not to do

Ie I have some childhood records that could support it,do I need to bring them,can I just take a photo or is it my word ect?

It's for a specific condition but can I ask if we add in more tests so we have a clearer picture? (Specific tests)

Can i have the appointment and they decide to reject me?

*It's ultra rare,I'll be the 50th known if it's positive**

First time being at Disneyland Paris, absolutely love it but we are struggling with food

Breakfast took 20 minutes for them to understand only to have the option of cake,sausages or bacon which is ridiculous for the price (or beans)

Went to the main park,with the tower of terror and there was nothing to eat other than french fries or ready meals. (Mmm puree carrots my favourite)

This isn't really okay,I understand Europe isn't as good with gf and celiac but seriously?

Is the other park any better,where do you recommend?

For context i have sensioural hearing loss,mild with apd features, ototoxicity but with some other abnormalities we can't explain.

Regardless this means I need moderate gain,fittings have to be power domes or occluding molds

Now this is where issues come up,I'm allergic to acrylic my ears swell but I need skeletons or a full set for retention as well

Phonak only provides silicone for canals and I can't find an actual company who will provide and make silicone molds. (For adults)

Help any advice?

(Also above an unknown threshold my apd "problems" disappear..any good guesses?)

Edit:

Specsavers said they'd help but it's been 6 months and..given up,they don't know either

So it's been a few years since I went abroad and beforehand I could buy a European travel pass to use data (Through the app)

Going abroad this week, obviously the app is dead and everything on the website saids it's only on arrival?

(Minus like..one tab which doesn't work)

Can we not do it anymore?

I am tired of fighting I've been doing this my whole life

I wish they'd give up and go "Yep we can't help you" rather then waste everyone's time

Useless solutions, useless tests that go nowhere,back and forth to consultants,GP's who are burnt out and don't want to be doing this (and they shouldn't be)

Equipment provided that don't even meet my needs,some even contain contradictions for prescribing them in the first place

And in the end I'm still fighting this alone

I've heared the stories of how hard it is to qualify for respite let alone breaks so I thought it was worth an ask before even attempting

I'm a carer for a family member with both physical and mental health issues,it's unpaid and unoffical but I need a break I'm at my limit

Especially while simultaneously being a student and trying to study

Is it even possible?

As the title saids

I'm a home cook,I have a special event coming up in September and I need to buy some new equipment

Obviously Nisbets comes up ontop,as well as having a physical store but is it actually worth it?

Also does anyone happen to know who sells a 2/24 gn pan that can ship to the UK?

(I can't find them sold anywhere)

I am tired and I don't want to keep fighting this anymore,it's been on too long and I've been doing It all alone

I have an umn disorder,or enough signs/symptoms it's realistically nothing else at this point,it's like cerebal palsy I'm very spastic and tight but it's progressive (eventual paralysis)

In all 4/5 years of this getting worse,me mentioning my injuries and showing up with bruises,cuts and scraped not one GP has self initiated ANYTHING

No occupational therapy, physiotherapy, Orthotics nothing

I've had to do everything myself,beg for help and I feel guilty like I wasn't bad enough for them to take action or even notice

I feel like a fraud,that I'm not worthy of anything and that I'm just lazy or dramatic

How do you even begin to feel okay about this?

I have absolutely no idea what I'm doing,I'm in the UK

Testing shows I have a motor neuron disorder, primarily upper so eventually I'll be paralyzed from the waist down (still no name)

This is my first year attending college with a confirmed progressive disorder,and at the point I'm needing mobility aids daily

What sort of accomodations do people have?

So for context I'm in the UK,fast fashion is absolutely rife and I grew up on it but I've moved on..mostly (trying..)

But with the cost of everything how do you actually manage it, logistically?

Ie in Primark I could get one shirt for about 7,or go across to another shop and pay 18 for one whereas I could get two for that cost at least

I know it's higher quality ect but this stresses me out to no belief

Do you just accept you have less clothes,budget or something?

I don't do temu or shien

And yes this is relevant,I'm a UK 18 so EVERYTHING is more expensive (and ugly)

Right away this is for me,I'm over 16 and I'm not intellectually affected so I am capable of managing this and understanding independently

But I am very stuck,sendias will not help and was incredibly rude I have tried previously

I have what is believed to be a motor neuron disorder,it is progressive in nature and I require equipment in my daily life,to socialise and attend education

The NHS will not provide the equipment under any circumstances due to lack of diagnosis,to the point one consultant accused me of having a factious disorder (aka being a liar)

I cannot afford to keep self funding as my needs change over time or equipment breaks,which then means I cannot attend education or placements *safely*

The LA saids it cannot go into a final plan as undiagnosed,I need a named condition for them to fund any equipment regarding this

But the waiting list alone is 38+ months to see a consultant and it's on average 5-10 years for a diagnosis (

So I've been interested about doing this for *years* but I've never had the opportunity until now

I live next to an industrial estate,we have a large green strip between us with trees bushes grass ect and technically they own it

But the only people that walk there is to smoke weed,it's completely unused (other then to sprint through the estate and over our fence,and smoke weed)

How do you manage the legal side?

Long story short I underestimated a walk and did 80-90 minutes in crocs, absolutely regretting my choices

My calves are absolutely shot and my knees keep buckiling

I have multiple conditions so I never know what is the "norm"

Long story short I was away for 2 weeks came back and the tomato bush has absolutely exploded in this UK heat

Obviously my first thought is to just blend them raw and freeze,then I thought about roasting but I have absolutely nothing from there

No I don't like bruchestta

Edit:

Woah so many replies can't even respond