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 😜😘😘😘

Gas mask

We're so utterly thoroughly entirely fed up with this bug now,

Max missed pre school the week before half term because of what seemed to be a sickness bug.
Was completely wiped out all half term with the most awful cold (I've actually never seen him so poorly with a cold) he ended up on antibiotics and now we're missing it again coz the stomach bug seems to back!!!
It's been almost 3 weeks now of being completely house bound coz there's nowhere suitable to change him locally and the last thing you want is to be caught short when you're feeling poorly!!

Our lovely home is starting to feel like a prison, germs our capture and peppa pig/football the method of torture (at least for me.)

It's so frustrating coz he's bound to pick up germs the same as other kids but when he gets so very poorly (every bloody time) it doesn't seem fair to constantly walk him into them by sending him into school with other people's teeny tiny walking germ factories....I'm seriously considering purchasing him a gas mask and protective suit to wear to school! 😂 I know most parents don't think twice about sending their child in full of Lurg so they can go to work/have some peace....maybe I should drop him off round theirs for 3 weeks next time!!!! 🖕🏻🖕🏻🖕🏻

and today's work out shall be...

Today I shall be performing all my usual daily housework duties all the while carrying a teeny tiny muscle man (no lie my son his ripped, he's like a miniature version of a contestant from world's strongest man) he is only 3 and is wearing age 4-5 clothing and they're tight on him!! Max has a stomach bug, and rightly so is feeling very clingy...so today he will be my beautiful assistant; annnnnnd for my next trick....

I will be stripping the bed whilst holding Max....loading the washing machine whilst holding Max....loading the dishwasher whilst (you guessed it) holding Max (and anti-bacterially wiping everything he sneezing/coughs/pukes on, coz frankly one man down is enough in this house!) ....put him down I hear you cry? Well as Max unable to follow me from room to room all the while clinging to my leg (spreading his germs around the house) as is protocol for the majority of poorly three year olds worldwide...my only other option is to put him in a wheelchair (or another cold hard, not living breathing OR cuddly like your Mummy piece of equipment) this understandably is not something Max is up for, he like every other child his age wants to hang from his mother when he's feeling poorly, also sitting still...(although is something I'm going to have to eventually give in and do...coz although he may be a muscle man I am NOT) is not really an option either until the bare minimum is done because in all honesty letting things in the house slip (in a house that feels like it contains 500 kids, a man and a ginger tosser of a cat)...even just for a few days is going to cause my hassle than its worth, my house has to run like a well oiled machine or it's bedlam.

I will also be bathing and clothing Max whilst all the while catching sick in a bowl what's your super power? haha!

The arsehole test

I've really met some wonderful children with disabilities and wonderful families who love them unconditionally. 

These children are unique and this uniqueness makes them extraordinary. 

I don't believe the popular saying that 'special' (god I really dislike that saying, after all they are just children, yes they have to overcome more than others, but their wants/hopes/dreams are the same as other children's...but I suppose there must BE a describing word, and as words go it's at least kinda nice.) children are only given to families strong enough to cope with them. I think that takes away from the truth; I believe that we (the families of disabled people) aren't given these children because we are better equipped to care for them than others so by association stronger than others. I believe that we are MADE stronger by having these children. 

Personally having my son has allowed me to open the door to a secret world I'd otherwise never have been allowed to see; I've met some amazing individuals that I'd never otherwise had the privilege to meet and I DO believe that parents of children with special needs DO have a beautiful strength that you might not see elsewhere but that is because of their child. 

I am fed up of seeing disability portrayed with sadness in the media. Yes of course there are sad times, but in the majority being the parent of a child with disabilities has enriched my life it's brought us happiness. We don't sit indoors every day feeling sorry for ourselves, our lives are not tainted by sadness. We don't need anybody's sympathy because we're certainly not feeling sorry for ourselves. If anything we are just getting on with our daily routine like everybody else. I'm always shocked when peoples offer me there sympathy what my boy was born with cerebral palsy (the main culprits of this are GPs) I feel like saying 'oh thank-you, and I'm really sorry your son is ginger.' (To me both are on par in the ridiculous-things-to-say-to-a-parent stakes 😂) 

I for one plan to teach my son that 'yes you're disabled and yes that means you'll face challenges in life that other people won't but each and every person in the world has their cross to bare. Others might be depressed, have Down's syndrome, be overweight, underweight, deaf, blind, or an arsehole...frankly I'd rather be any of the above than an arsehole.' (Can we get an arsehole test please? Now THERE'S a test I could get on board for!) I will teach him to laugh in the face of adversity instead of feeling sorry for himself. I think that we show children how to view themselves, and if we show them that disabilities are something to be sad about then sad they will be. 

Of course there are varying degrees of disability and there ARE those that will suffer more but us as a society playing god with lives scares the absolute shit out of me. Do you think were we to ask these individuals that they would chose never to exist? 

I'm not against termination as a thing, don't think for a minute I'm giving a pro life speech here, I think that we are lucky to live in a society where we given a choice, but it is the act of aborting a child just because he or she is disabled that scares me...

anyway...this was never supposed to be a huge speech....I just wanted to say; a world without variety is a scary thing, and is not a place I want to live. 

#itsbeenemotinal #thankyouandgoodnight #solongandthanksforallthefish 

*gets off soap box* 

http://www.bbc.co.uk/news/amp/magazine-37500189?ocid=socialflow_facebook&ns_mchannel=social&ns_campaign=bbcnewsmagazine&ns_source=facebook

Mount regret

Right...today I woke up with all good intentions of getting organised for the week ahead; we have a pile of clean washing in the utility room I've began to fondly refer to as Mount regret (coz I regret not putting it away as I went...today I was gonna conquer the bugger...(I mean I'd need some climbing ropes and pick axe but I was up for the challenge.) Getting the uniform, lunches, school bags ready in plenty of time instead of a mad rush, I was going to cook a huge roast dinner and take Max for a walk in his new wheelchair....

....BUT none of that happened, Mount regret still stands, Max's shiny new wheelchair managed to give both Joe and I backache coz it's made for dwarfs/pixies or children to push, and during our walk we discovered Max droops over to one side in it because they didn't put any lateral supports in it! (On a brighter note I've finally found a use for the support cushion the wheelchair services once gave us instead of a wheelchair, it fits quite nicely in his new chair and works as a lateral support.) The kids have been teeny tiny dearest darling little arseholes all day so much so that I actually thought I'd cry at one point and ended up in complete giggling hysterics at the ridiculousness of it all,  and the huge roast dinner turned into a dirty kebab from the take away
and I'm rushing around doing the uniform, lunches and school bags last minute as per usual.

Here's hoping your Sunday was more successful. ✌🏻️💛

Max's blog now has its very own Facebook page

As from today; Max's page is up and running, instead of using my blog page for both of them, give us a like if you so wish; https://www.facebook.com/The-secret-world-of-Max-189087951519961/

Bare with me whilst I get it up and running over the next few days.

Thanks for your patience.

Dinner time blues.

I know I've said it before...but I'll say again; dinner time in my house is a dickhead.

First you have to take into account lactose intolerance (❌🐄) then no mixed textures (❌🍜), 2 out of three of my children need their food separating up, one needs it chopping into absolutely teency weency pieces...meat can't be chewy, veg can't be 🍗🍖🌽🍆crunchy....after I've taken all these things into account and still managed to dish us all up the same meal every night....(not that I make the same meal every night, I just haven't given in to making separate ones just yet.)....and I bring it to the table feeling quite smug...coz it unbelievably still looks tasty....the whining commences....food....FOOD?! You have the audacity to serve me up food woman; My daughter is just not a fan...and it's through no fault of her own....BUT then the boy listens to the whining and absorbs it like the little sponge he is, and joins in coz his big sister is just so cool....and my darling husband is trying to reason with my daughter about being rude about her dinner but she doesn't get it (because she's her...she's not trying to be rude...food is just difficult for her she has sensory issues...and foods always been a problem....)but when you're just sitting there with your stepford wife smile painted across your face dying inside that dinner time really IS such a joyous occasion in your house and your son suddenly gets over excited about something and his arms are flailing in the air (again he can't help it poor body control is part of his condition) and his dinner goes flying through the air.....and mayonnaise is all over the carpet....and they're STILL whining about the poxy dinner you lovingly prepared... and you are ever so tempted to shout 'you ungrateful little bastards!' at them but that would be wrong...and they can't help it....so instead....you just smile sweetly...clean everything up and contemplate boiling your head.....in WINE!!!!!

https://www.facebook.com/The-secret-world-of-Max-189087951519961/