I'm not one to moan....

I'm not one one to moan, we all know that sentence is almost always followed with a list of gripes...well here's mine;

Since having my gorgeous son I have come to realise how difficult things are made for people that are disabled in society...before having him; I like most people assumed that people with disabilities were well looked after by the government when in actual fact there are some really important areas where we are sadly lacking (Medway I'm looking at you.)

Im not saying there isn't help out there; if you are the RIGHT sort of disabled 😋

For those that are disabled EVERYTHING is a fight....first you have to fight tooth and nail for a diagnosis...you have to fight with the GP to refer you, then fight with the consultant to do the right tests (by first convincing him your not a hypochondriac, con man, or benefit scrounger, or that you don't in fact have some mental illness yourself and arent in fact imagining these ailments) you then have to wait ridiculous lengths of time for the tests and results. When you get your diagnosis you have a mix of emotions, you're sad because now  yours/your loved one life isn't going to simple, it's official, your fears have been confirmed, but you've got a diagnosis right? Help's on it's way right? Superman is coming, Wonder Woman is on her way...The professionals, equipment and tonnes of money are winging their way to you right now? Someone's going to turn up at your door with a free car, life's at least going to easier now right?

Wrong!

when applying for disability living allowance people with disabilities are made to feel like scrougers, they are asked so many intrusive and often degrading demoralising questions and made to a prove their disability so there's absolutely not a shadow of a doubt that they are in fact disabled; even though those funds are there with the sole intention of improving the standard of living for them? Surely there's a better way?

Then if you are so lucky to be granted access to this almost unobtainable pot of money, you'll find everything for the disabled, is priced up; if it's marketed specifically for disabled people, you'll find you pay through the nose (I honestly don't know how some of these companies sleep at night.) Also for a lot of disabled people their disabilities doesn't stop with what you see on the outside; they are often effected on the inside too (makes sense really if you think about it) and therefore they are on specialist diets, that cost more than the average person, they need specialist clothing and shoes as well as all the other specialist equipment that isn't provided, so that magic pool of money fast becomes more of a teeny tiny droplet.


Also don't take your droplet for granted, because there is constant threat to cut it....recently there's been talk of cuts to schools across our area; which is terrifying; my son's condition means cognitively a mainstream school is the best place for him, but physically he needs somewhere that understand and can meet his needs; luckily we found just this, and I couldn't be happier with his progress there, they are the only school in the area that could cater for his needs and that of a good number of children that go there, yet they are under threat of budgets being cut...if I were to have to change my son's school as part of his condition he would find this very stressful, (as would a lot of the children that attend) it takes him a long time to build up trust with people/to feel safe and secure places...if I had to put him in a run of the mill mainstream they wouldn't be able to meet his physical needs and In.a special need to school I would worry that he'd deteriorate socially.

In my area you cannot without extreme difficulty get a wheelchair for an under 3, even if this means that without the wheelchair their condition will deteriorate and they will in fact end up costing the NHS loads more money in corrective surgery and the like, which is far greater than the cost of a wheelchair. Doesn't make great financial sense.

Also in my area a child with continence issues is refused help from the CONTINENCE clinic if that child is under 4, and has supporting evidence from not 1 but 4 professionals...and even when said child reaches the magic age of 4 help is not guaranteed...even if the nappies you can buy off the shelf would no longer even fit round the child's little finger. So if the continence services are not there to help those with continence issues please tell me who they are for?

Please let's talk shit...when you and I are out and about and need the toilet nobody suggests we should lay down on a piss sodden blanket on the floor...there is room in which to get on and off of the toilet...and we are never far away from a public restroom. Not so for a lot of disabled people, of course there are quite a few 'disabled' facilities (if you are lucky enough to hold a magic key...if not, bad luck you need to complete the labyrinth before you are allowed one...all the whilst still needing a shit!) but the sad truth is that (even if you completed the labyrinth and obtained the magic key relief could still be a long way off because;) most disabled facilities are unsuitable for a lot of disabled people, those that need a bench on which to lie are ruled out, those that need a hoist because they've gotten too big for their carers to lift on and off of the toilet (or imaginary bench) are too often ruled out. Hell! Even those in wheelchairs are ruled out in a lot of cases because they need enough room next to the toilet for their (sometimes quite bulky) wheelchair so they can get out of the wheelchair on to the toilet. (What's the problem? I mean they could always WALK!! 🙊 (how insensitive of me!) If I'm honest the lack of decent changing facilities often puts me off taking my son certain places.

Often though if we do brave it, we are thwarted at every turn; sometimes it's the shop door is too narrow for a wheelchair/there are steps/the goods in the shop are set out in such a way that driving a wheelchair down the isles is impossible even for the likes of me (I dunno if you know but driving and coordination are a strong point for me! 😂😂😂)

Anyway that was my list of gripes, do with them as you will, read them, ignore them, bitch about them, share them, keep them, copy them. I'm easy and I never moan 😜😘😘😘