Sunday, 29 June 2014

the autism show

today,am very greatful to a certain bolton lady from creative support.
despite having it saved on the browser toolbar in plain obvious writing,had forgotten all about the manchester autism show; coming up and this morning we got a call from that bolton madam to say she was at the show and had got us staff passes for it-awesome.

stopped off at starbucks first to grab the usual frappachino [whoever made it sucks at making them] and then went to the show.
we got the passes,and went in,it was amazing,went to artismUKs stand first and they had an artist painting in real time whilst a lot of artworks of autistic people were up on the wall-was very surprised that not one person had painted a cat,although a lady had done some awesome sketches of her rabbits,come on, whats going on? no cats in an autistic gallery? thats just wrong.

got loads of catelogues off all the stands that was very interested in,and am going to apply for funding for some things that will really help life,such as a safe space.

a very nice lady from liverpool was there with her daughter and she saw that was wearing a heavy weighted lap blanket [was sat in the wheelchair],she wants one for her daughter and has just gotten funding to buy one but doesnt know if itll benefit her-let her try it out and tried to express what it felt like when using them as they have no access to try them out but was unable to apart from signing and one word 'relax',pity she isnt reading the blog as woud love to tell her of how much benefit they have been to life and other people all over the spectrum.

no sports groups were there which am surprised about; given how so many autistics struggle with exercising or eating obsession,woud have been good to see different sports getting represented there to show autistics whats available and to show parents we arent incapable of how adaptable sports can be,school taught a lot of autistic adults to hate sports because they werent competitive or great at it,its about time the attitude towards autistics in sports was changed.

the best stand there,in own view was the autistic rights movement,although they didnt have any easy read/symbols backed up papers to read,was glad to find out we finaly have an ASAN type group that is sticking up for our rights and had immediately registered to be a member there.
support staff read out their beliefs and goals,and straight away had related to what they were saying,cant wait to be an active member and itd be good to know what we coud do in the community to help.

there were various speakers there doing talks,but the one had wanted to see;prof simon baron cohen was on yesterday,and the autism show website said his speech was based on males with autism; jesus will people stop pushing this outdated stereotype and remember we [female] exist to?

finaly,came across a old staff [outreach manager] of mine there from the national autistic society,felt awesome to catch up with her and she is bringing the old crew with her to visit and see the rabbits.

then we left,got back,cleaned the rabbits out-and was to knackered and overloaded to go back to the show to catch john 'my sons not rainman' williams speech.

cant wait for next years autism show!

here are some pictures;
 autism rights movement badge

 freebies; national autistic society bracelet, creative supports autism awareness bracelet and two bracelets from prestons space centre sensory/soft play facility for disabled adults [been meaning to go there for years and now theyre owned by the company am supported by].

 staff pass.

a see through tube that has glitter in it and changes colour a bit like fibre optics when tipped up or down,love this-one of the best things have ever bought,the lady who owns the company ended up taking a photo of self playing with it for the stores website,cant remember the stores name yet though, will need to sift through the catelogues.

blog under construction-business as usual though

have decided to alter the blogs design a bit because it was so small that it hid some of the choices, am also in the middle of redesigning the logo because it features tito;the beloved hand reared pet cockerel who was kidnapped last july along with other babies of mine and am going through a lot of pain with what happened lately,plus the background itself is shit-am not very good at graphic design and only use GIMP.

have also turned comments back on; so that everyone who is registered or uses an open id or something like that can post,the reason had not done so far is the blog was getting spammed and coudnt work out what was a genuine question and what was bullshit.
if anyone with a blog has got any ideas on fighting spam,please share-woud be very greatful,thanks!

Wednesday, 25 June 2014

special olympics competing

finaly have an update on the special olympics front.
am now a athlete of both the cheshire north & bury special olympics clubs.
from next week am starting swim training with cheshire, and with the bury club am doing boccia from july.

Sunday, 15 June 2014

getting thanks off the NHS for activist work

had been given a letter yesterday from the head of nursing at the hospital that started the UKs NHS; trafford general hospital-otherwise known as park hospital back then [was born there in ninteen eighty four and have a shitload of history with that place. :P ].

the letter was in easy read format,which meant for the first time was able to follow a NHS letter, am not able to read from paper because cannot read on a white background,theres to much writing which causes a processing overload and the font sizes are small so family/staff have always read letters.

the letter thanks for the recent activism work had done at trafford general hospital,when had teamed up with trafford social services ID team [along with two other service users] and mencap;the national intelectual disability charity of the UK to train up the hospital on intelectual disability.

its great to be actualy thanked for doing something even though am not in activism to be thanked,its nice to know its been recognised.
here is the letter,

Friday, 13 June 2014

communication PECS have finaly been updated

finaly have updated PECS/symbols so am back in business,current PECS were all almost specific to the last residential home had been living in and was also made pretty stressed by seeing them because of the circumstances around the last place.

so thanks to a program have used for years;a completely free program called picto selector have managed to update a lot of PECS to ones that are far better than board makers.
still have many more needed but do not have a laminator here nor colour printer; last laminator hasnt ever been given back by last place as they used to borrow it all the time.
am being given a board [like in the following photo] to put in bedroom for the PECS,but for now have just stuck them all on the staff board.

Monday, 9 June 2014

bee aware of the hot weather-a bee allergy rears its ugly face

yesterday,was at the petting zoo at walton house and gardens,in warrington [can totaly vouch for that place by the way for those who love animals],its free to get in and it was hot weather so we always have a plan in place for that.

was being pushed around in the wheelchair by one of the staff who was overcome with mentalness because a male peacock kept spreading its arse feathers out at her and as a result was rolled into the fence a few times as she let go-thwack!
unknown to self it had quite rightly pissed off the bees who had been nesting in the fence [that was also unknown to self until we came across a sign and the staff read it out],and unknown to self again- had had no idea the little shits had unleashed its fury on an arm of mine.
can just remember this unbearable pain spreading throughout arm and it swelled up massively. had never saw the bee at all so he was pretty ninja at his job-but the jokes on him anyway as everyone knows what happens to bees after they lose their sting.

it turned out there wasnt just one bee there were two of them involved,so was stung in two places on arm very close to each other however managed to get most of the sting out from one of them.
we went to an NHS 'walk in centre' at the hospital and was advised to take an extra anti histamine as soon as we got home but had just nicked one of dads instead because we did a detour his way first to drop off a present for the nieces of mine [a swing from asda].

the pain was unbearable from the sting site and it was giving off some serious heat.
anyway,today woke up and it was seriously inflamed, they phoned NHS direct as being in protective care they arent allowed to use any over the counter medications on it,NHS direct said its just a normal reaction to the sting and to draw around it to monitor how bad it gets,so staff goes and gets a permenent pen marker of all things.

had also been feeling sickly today on and off-and had a really painful neck/under the jaw.
we ended up back at the NHS walk in centre this evening and it turned out the 'natural reaction' is a severe infection,the neck pain is the infection having spread to glands and have been prescribed high doseage anti biotics for at least a week.
picture included [the red and green marker doesnt show up as bright on the photo];

its an absolute fucking good job am not badly allergic to bees,am not even the type to go mental when they land on self so how the hell all of those running children hyperactive on ice cream and their poor parents following them closely behind got away without getting stung will never know.

DSUK; adventures into disabled snowboarding & other sports

am going to be starting disabled snowboarding soon,at the chillfactor in manchester;
we are already in the middle of sorting it out,costs are expensive until have got annual membership but am saving up and cant wait.
in about a week or so,will start doing the special olympics training twice a week,and then the snowboarding once a week and ten pin bowling once a week as am pretty good at that and have only just started.

hoping to save up for a three wheel recumbent [low level laid back position,bit like a pedal go kart] bike as well.

Friday, 6 June 2014

a bracelet that senses epileptic seizures?

recently was given a epilepsy sensor bracelet by the social services epilepsy team and it has helped staff know straight away several times when they have gone to the office or lounge so they have been able to rush in.
this is it;
it looks like cheap plastic crap but is a fantastic bit of kit,life saving.

Wednesday, 4 June 2014

ridiculous ignorance and discrimination from a swimming pool staff

went swimming yesterday at the manchester aquatic centre with the two support staff of mine,its standard for both carers to be allowed in for free as they are there to support.
however,this lady at the desk started arguing with staff asking why am in need of two support staff; as aparently disabled people only ever have one carer-thats news to loads of us then who are on two to one support.

staff sorted it out with them in the end and both got in free,but its a small sign of a bigger problem, most places do not allow two support staff in for free as they think every disabled person only ever has one staff- knowsley safari park,blue planet aqairium, and lego land at the trafford centre to use some examples are guilty of this and am expected to pay for the other carer which isnt possible at their prices.

when will the general public understand that not all disability is equal,many of us have higher support ,behavioral and physical needs that require two support staff.