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* 

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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!!!!!

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Appropriately dressed (the non muggle version)

This morning my son was in a 'high needs' mood shall we say....I've never worked out what triggers it but some days he just needs me more...this morning was already shaping up to be a no leaving the room (or even his line of vision) /no solo peeing/everything he is offered for breakfast is yuck/the juice in his cup isn't peach sort of morning...but then when you add the fact that we're running late...and I've still got to strap Max into his wheelchair/strap his feet/pack his thickener/medicine/splints/spare shoes for on top of the splints...so it's one of those mornings where everything is taking for ever..whilst I'm ATTEMPTING to be on time somewhere (for once!) when I leave the house;  I'm silently congratulating myself (whilst looking down at my feet) for wearing matching shoes, walking down the road smoothing the back of my (hairy) cardigan over my bum purely to check if I have a sock/pair of knickers (a discarded coathanger/pet dog/small child) attached and hanging there for all to see where I grabbed it from the washing pile this morning and threw it on without checking....having got to where I'm going I'm checking I'm not sporting a toothpaste dribble on my chin or a bogey hanging from my nose (oh don't be disgusted nobody wakes up perfect especially if you have no time to get yourself ready coz you're too busy making sure your child is immaculate!) in the mirror in the bathroom after having rushed out of the door running late. Now I'm sitting in public discreetly feeling for the label in the back of the neck of my top to check if it's the right way round. You'll be pleased to know all is as it should be (this time) but I feel I deserve a high 5.

Footnote: You can find the muggle (non magic folk/non special needs parents) version here http://watchmeslipwatchmecracra.blogspot.co.uk/2016/09/appropriately-dressed.html?m=1 we're now on Facebook https://www.facebook.com/The-secret-world-of-Max-189087951519961/

Frustration

As the parent of a disabled child you spend a lot of time getting frustrated. Frustrated that when something is labelled 'Disabled' or somewhere prides themselves on being 'disability friendly' that there is nowhere suitable for a disabled person to use the toilet. (Even after you've jumped through several hurdles to gain access....by either requesting a key from bar staff....playing a guessing game....completing the labyrinth...competing in egg heads/mastermind....or some of us (we shall call them the chosen few) even posess a MAGIC key!) Then after all your efforts to gain entry it's so  very frustrating (soul destroying) when there is no changing bed in a DISABLED  toilet but a BABY changer instead...if I can't change my son who is 3 on a baby changer, how the hell do they expect a disabled adult to use it 'oh excuse me whilst I pole volt my way onto that minuscule baby changer! We are not ALL Andy Pipkin!)  Seriously?! Get a grip! The sad truth is that most people will either drive to the nearest suitable disabled toilet. Leave and go home (all the while STILL needing to use the toilet) or have to lie on a piss sodden floor....yes of course they'll have brought a blanket/antibacterial wipes but tell me would YOU be happy lying on a cold floor piss covered floor? Let alone lay your precious loved one down there?

https://www.facebook.com/The-secret-world-of-Max-189087951519961/Frustrated about wheelchairs! I don't know about your experiences of this but for us it wasn't a surprise when our occupational therapist said Max's buggy was no longer suitable for his needs, he would need something more supportive as he can't support himself enough to sit up, he used to end up on his back) or it would make his condition worsen/damage his spine/posture...so   Did-Diddle-la-duh in ride the wheelchair services....'computer says no.' Sorry miss your son doesn't meet our criteria he's not old enough/ disabled enough..(on the day he was seen he was having a good day tone wise and looked like he was sitting well...he's the wrong ethnic origin....his hair colours all wrong...I'm obviously exaggerating for effect but that's what it felt like....that's how ridiculous it is...professionals are saying he needs a wheelchair but he doesn't meet the 'criteria' because of his AGE you wouldn't get away with that if it WAS about hair colour or ethnic origin and they are both equally as absurd! Is his condition going to worsen in the time it takes him to turn three?! No....he will STILL be unable to support himself for long periods of time in sitting as is the case now...he will just be OLDER) ...have an insert for your buggy....(which will not only fail to help your son to sit supported...it'll also make the poor little sod resemble a tortoise coz it'll be strapped to his back when he DOES end up inevitably sliding down in his buggy.)   We were assured by people after the appointment that had we been from elsewhere in the country then Max would meet the criteria and would have been given a wheelchair....it's a 'postcode lottery' apparently. (Comforting!) obviously we bought an adapted buggy/wheelchair....that cost our us (and other generous members of our family) the best part of 2 grand (but the government CHUCK money at disabled people I hear you say?! Haaaaaaaa! I don't know if it's an all encompassing rule across the country or if it's again a 'postcode lottery' but unless you are THREE (ah the magic number again!) you aren't entitled to the mobility component of disability living allowance as *drum roll* wait for it....you could in normal circumstances still be using a buggy for a 'normal' child and I don't know about anybody else but the care component of his DLA doesn't stretch far when you take into account all the special equipment/special dietary requirements/feeding aids/apdapted clothing etc etc etc etc etc etc..... You'll be filled with joy to discover Max now meets the wheelchair services requirements having reached the golden age...we are hopefully collecting his new wheels this coming Friday!

Frustrated that it just isn't out there. Yesterday we attended an open day showcasing some of the sports that the paralympians do at the Paralympic games at our local lesuire centre...a brilliant day was had all round, Max tried tennis..the guy teaching it was amazing and told me all about how he would teach my boy to play if he were to...but upon asking the gentleman about local classes...I was told I would have to contact my local council to see there was demand for classes at say a local school...as he would have to charge if the lessons were private and he had to travel (fair enough but the answer to my question was 'I'm sorry there are no classes suitable for your son locally.') We spent most of our time playing football which is Max's first love...now here I didn't bother asking...having already investigated whether they provide football classes suitable for my son in our area...but I was GIVEN a leaflet voluntarily and told by the gentleman teaching that he thought this club might have something that would accommodate Max's needs (I should have known by his vague use of language) but I allowed myself to be taken in, he also told me to contact him if I had any problems (haha) when we were home I contacted the club on the leaflet asking if they had classes suitable for Max....computer says no....I'm sorry miss your son is not the right sort of disabled...(obviously she DIDN'T say that....she was actually very apologetic and charming....so was the guy when I contacted him...do you know what though mate?! You KNEW they couldn't accommodate his needs when you gave me the pissing leaflet without being asked...!) Do you know what? All I want is for somebody that is not me to do ball skills with my kid for an hour or so a week...because he is 3 and has all this pent up energy that he can't burn off without assistance and frankly I'M EXHAUSTED!

Sleep.

Sleep is something that's alluded us for almost 4 years now. We've never been able to put our finger on one solid thing that wakes Max up. It seems to be lots of things; being unable to successfully position himself is definitely an issue, (he has sometimes ended up accidentally rolling onto  his front and being stuck and being unable to flip himself back over) he seems to sensory seek and I think sometimes his reflux bothers him and also it seems he just struggles to switch off his brain!

I have 2 other kids, who I was always very strict with about having a routine, I tried to put the same measures into place with Max, haha how naive I was, but in truth he's never learnt how to fall asleep on his own he still falls asleep on my lap downstairs (he's always needed a lot of physical reassurance, children with Max's condition can have poor physical awareness, they struggle to feel where they are in world...their body awareness is just completely different from our own and this can be scary) and I carry him up but I spent hours (nights) settling him back to sleep in his own bed, For those of you thinking I could have tried harder to help him to self soothe and find sleep on his own...if left on his own in his bed Max would very quickly become terrified, his startle reflex would go into over drive so it almost looked as though he was having a sezieure and he would cry so hard he would go blue and throw up, not being able to move yourself off of your back when throwing up has the disadvantage of choking on your own vomit. There have obviously been very few terrifying occasions when I haven't woken quickly enough and he's become this upset and literally found myself spending my nights listening to him in the end.

 I've tried baby monitors, white noise, leaving a radio on low, cuddly toys, hot water bottles, dummies, weighted blankets, reflux cushions, special lights, pitch black, sleep forms (which is something designed for disabled people that can't position themselves.) These all helped to an extent, we tried putting him in the same room as his sister (she just ended up being disturbed) we spent years all of us being disturbed, me up and down, (sometimes 17 times a night) it got so bad that I can remember crying through sheer exhaustion, my husband ending up sleeping on the sofa as there was no room in our bed. but actually in the end there was in there was no way of it continuing, so we contraversiolly bought a bed we can all fit into. I'm not going to say it solved ALL our problems, I still have the odd sleepless night if Max is particularly struggling but all in all we are sleeping better, he does still wake regularly and I still have to reposition him/ stroke his nose when he's sensory seeking, but he settles much quicker when he knows we are there, and I can sleep because I'm not on constant Max watch waiting for him to wake up (in the end we actually found ourselves worrying when he WASN'T waking up...but that's what sleep deprivation does to you.) and my husband can sleep in his own bed! This obviously isn't something that can go on forever, at the moment it's fine as Max is only 3 but we'll need to find some way of him sleeping solo soon. I just never wanted that to be drugs. The Dr has suggested a sleep diary so the disability nurses can offer some advice but after so long with no sleep I have to admit I'm struggling to fill the bloody thing in.

We have found there ARE certain times Max sleeps better! Contraversiolly when it's HOT!!! Because his muscle tone is much looser in the heat, so he's not as stiff, his limbs go sort of floppy (well floppy for him) I call him my spaghetti man. Also the fan helps, I've not worked out yet whether it's the noise or the air, he sleeps when he unwell (we usually see this as an indicator he is coming down with something along with changes in his muscle tone and feeding abilities.) The best Max has ever slept is in a caravan when we are on holiday! We don't know why? All I know is I need a caravan! Haha!


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Cerebral palsy

A lot of people I've met don't have the first clue what cerebral palsy is;

My understanding is that 'cerebral palsy' is a blanket term for movement disorders caused by brain damage. Once diagnosed with cerebral palsy you are then given a subtitle if you like; including spastic (which I think is the one most of us think of when we hear the term.) dystonic, dyskinetic etc. This means that no two cases are the same, so when somebody tells you they have cerebral palsy you can't assume you know what this means for them.

For my son his cerebral palsy effects him in all four limbs (but you can be effected in as little as one) Max's muscle tone is high (this means this limbs are very stiff, but in the heat he becomes much floppier.) For Max this means his gross and fine motor skills are effected, Max is unable to sit independently without supervision for any period of time, (after significant time practicing conductive eduction he IS able to sit independently for short periods of time but as he extends out he is likely to end up on the floor without supervision.) Max is also unable to walk (he can for very short periods of time in a walker but is for the majority his time is spent in a wheelchair) or crawl independently, and his hand movement and control is poor (I hate writing that! Actually, compared to what it WAS like it's amazing but for the purposes of explanation.) Max has a squint in both eyes which means he can appear cross and boss eyed, and wears glasses to strengthen the muscles. Max is also effected inside as well as out, he has a series of feeding issues such as poor oral awareness (which literally does what it says on the tin, he struggles to feel certain things in his mouth, which means he struggles to control them. I find strong flavours can help here.) As well as this, Max has slow mobility, which means his food takes a long time to travel to his stomach, so he can feel full quickly, so needs to eat little and often (when Max was smaller he was on puree only which meant I was literally spending my days feeding him as puree is so quickly digested, this has thankfully improved with age, he's now able to eat certain foods cut into cm square sized pieces.) Max has an inadequate swallow, which means he sometimes has trouble clearing his throat, and pieces of food can get stuck back there (giving him a dry spoon, or a dummy helps him clear his throat.) Max also has acid reflux (his is silent) and is a risk of aspiration (it means he is at risk of food or drinks getting into his lungs and causing him all sorts of problems) because of this Max has to have all his liquids/drinks/soups thickened to a smoothie like consistency. As well as this Max's startle reflex is extremely pronounced (you know the reflex new born babies have when you lay them on their back where their arms and legs fly into the air.) and he seems to be over sensitive to certain pitches of sound and is much more easily startled than others, his sleep and toileting is currently also effected. . I'm sure there are other ways he is effected but presently that's all I can think of, I'll come back and add as they come to me.

Along the way we've met lots of different people who are effected completely differently by cerebral palsy and the way I understand it is that the area of your brain that is effected is what determines how you are effected physically/mentally.

If anyone would like to correct/or add to this please feel free to comment, coz as I said this is really only my understanding.

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Conductive education

For those of you that don't know; conductive education is a practice that provides children/adults with movement disorders such as cerebral palsy with greater independence and control of their movements/body. This is done by showing them alternative methods of performing tasks such as independent sitting, crawling, feeding etc it's an all encompassing therapy that you can practice at home, it's more like a lifestyle really. In my area we are extremely lucky to have this provided by a local charity called step and learn.http://stepandlearn.org

We have found conductive education to be extremely beneficial, more so than any other therapies we've been offered. My little boy has been attending twice a week for well over 2 years now and when he started his hands were in fists most of the time, he was unable to sit independently at all and he was completely unable to move on his own. Max can now sit independently for short periods of time under supervision, his hands are no longer fisted and although his fine motor skills are still a struggle for him they've improved so much!! Max can now walk for short distances in his walker (although he is predominantly in a wheelchair) this provides him with the opportunity to play his greatest love football in the garden, and he's achieved so much more, that we credit to this amazing practice. Conductive education has improved my son's quality of life so much, and now I sound like an advert and I assure you nobody is paying me but do yourself a favour if you think you or someone you love would benefit don't hesitate to find out if it's accessible in your area. You won't regret it.
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I HATE thick and easy!

For those of you that don't know what thick and easy is; it's a liquid or food thickener for children and adults that have an unsafe swallow, and at this is does a sterling job, it ALSO does a sterling job at getting absolutely bloody everywhere! In powder form whilst you are adding it to your food/beverage it gets everywhere, once you've added it then transforms whatever you've added it to into a thick gloop reminiscent of something secreted by slimer from the 1984 film ghostbusters! It then gets EVERYWHERE in gloop form too and adds a kind of texture to your drink! Mmmmmm textured drinks! Just what you want!

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