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!