Am still alive honestly

 

I do apologise for not doing many entries of late and for not commenting much on anyone elses journals...With it being the school summer hols i just don't seem to have much time spare...So this is a catch up kinda...Most of which is continuing bad luck am afraid :o(  ...It really has to change at some point and sooner the better grrr

I tired to get a car and failed...Even though the salesman assured me i would get the finance from them i didn't...So i have been trying elsewhere but i really don't hold out much hope...I am seriously considering talking over with my social worker about trying to get M's DLA mobility changed to high rate...It peeves me off that others i know who have kids who are at about same level as M get high rate...He's 15 and his road awarness skills are at about level of a 5 year old...I know that low rate is for people who need someone to accompany them about but there is a limit to how little help is actually needed...He cannot go out unaided...It's too dangerous and he is far to vulnerable...Now i really don't mean any offense here...For some it is a given that they automatically get high rate...Heart condition, wheelchair, amputee...That may have changed but as far as am aware it hasn't...Now the first two of course they should however i do have issues with the latter...We used to have someone living across the street who was an amputee...He had a false foot and he had no problems whatsoever getting around...He had a disabled parking bay in the street no problem and a motability car no problem...His wasn't even adapted...If it had been then i wouldn't have been so cynical...I really don't have a problem with it as such but to me and to most i know there are differences between needing someone to be with you and someone having to be with you ALL the time...M has no independance for getting around at all...Ok on the very ODD occassion he has managed to go to corner shop and ONCE managed to go slightly further...Those times are few and far between...IF i try to get it changed and IF they award him high rate then i will be straight there changing it to motability for a car...This would also have other impacts too in that he would get help from motability for driving lessons if he decided he was capable...Hmmm can't seeit but you never know...Or for G to get driving lessons to be able to transport his brother around...Actually i think i will go and rock that boat...They cannot take away what he already has because he is defo still very much entitled to the rates he is currently on...If they take away the life award then so be it i will just fill in the dratted form every few years LOL

The boys won't be going to the residential as it is full up :o(  It's run by the edinburgh FABB people and they get grants from edinburgh council to run it...They do take people from outwith edinburgh but there was enuff from edinburgh this year...Also the person within FABB my social worker was talking to didn't pass on to the others on the committee that she had 5 from here interested...Which is really annoying as they didn't have any applicants for the younger group...They did consider using that week they had booked for younger age for the older age group...There wasn't enuff older ones though...If he had said there was 5 from here interested then they could have done it but they cancelled the booking they had for younger lot...So so so damned annoying...Next year we will get in there earlier and the FABB people in edinburgh are going to get the ones up here to do a week for our city...I really needed the break NOw but hey ho...I got letter today and i have to send my £50 excess to the builders my insurance use...Then once they have that they will get the builders they sub contract to here to come do the work...Why can't they be like the flooring people and just let you pay direct when they are round <sigh>

G was in hospital yesterday for a minor operation on his nose...The nurse taking the info was surprised when i said he is aspergers...She said must be very mild...Grrrr i hate that word...I said well he was diagnosed autistic at age 3 and he didn't speak until he was 5...He also has learnt to cope with the condition so well over the years...Thing is yesterday he wouldn't really talk clearly to the nurses, anaesthetist or surgeon...He mumbled at them instead so i had to translate...Now reason i hate this use of mild or severe is that it implies someone mild really doesn't need any help...RUBBISH they do and in fact probs need more help than someone severe because they get overlooked as they come across as capable and that they do understand...He didn't like being there and he didn't like talking to them...That is a social skill he is still learning to improve...He did break a smile and spoke clearly at one point though...In the anaesthetic room of all places...One of the other anaesthetists popped in and said to him "Now see this is the kiddies hospital and we don't cater for tall people. So we can't give you an anaesthetic but we can knock you out with a hammer instead. Now would you like wood, rubber or steel" LOLOLOL...Poor G was slightly too tall for the theatre trolley and for his bed in the day ward...Ok so he is 6 feet tall and technically kids hospital stops at age 14...But not all kids are short even below 14 years old...Anyways he did giggle at that bloke and spoke back clearly at him :o) The op went well and hopefully will improve his breathing...He is officially allowed to sniff for the next couple of weeks as he's not allowed to blow his nose in case it bleeds...They said he'd be more bunged up for about a week then should be fine...He has cream to put up his nostrils and he got given ibuprofen for pain...Hmmm they asked the lad in bed next to him if he took pills or liquid and he got pills...They didn't ask G and i assumed that was because be obvious he took pills...So we now have a nice bottle of strawb flavoured liquid ibuprofen for kiddies LOLOL...As you can buy it over the counter now i will give it to my best pal for using with her 2 if they ever need it...I did have loads to catch up on but gonna leave it for now...Oh we have much much cooler weather here today which is good...I don't mind the sun and i don't mind the heat too much but what i do hate is heat and no breeze at all...Grrr it threw a hissy fit at me and wouldn't let me add pics and wouldn't save...Cut and pasted what i had written onto email and then tried again and it did save and let me add pics.

Toodle pip tc xx