Lilo

Lilo

Friday 7 October 2011

Sharing, Caring and how time flies


It's now a year since we started our support with Enable.
It took us a few months to do the paperwork, get the budget and then decide who we would get support from.
Hey - scary stuff. I've never done this kinda thing before. 
But i had to try.
It was getting to stupid, being told when we could have support and who with by the council. And where Peter could go for respite.
Like, duh - do these people who organise such things really know Peter better than we and our friends do?!?!?!?


The photo above kind of sums things up. Over the past few years I have cried plenty on tears.
 Frustration mostly.


Frustrated by the slow wheels of officialdom and what "Professionals" have to say about my son. Social Workers who say that he is "no different from other kids his age" and  that "we didn't turn up to meet respite families" when due to them not knowing their bums from their elbows kind of forgot (on purpose?!?!) to tell us where and when the meeting actually was!!!
I've even been told that the crisis no longer existed when it was obvious to people around us that we needed HELP!!!!


But the past year has been good.
We got the help and the support that we needed - at last.
An we got to choose who we got it from, when we got it and hey - we even got to ask for extra hours when we needed them.


Had i moved into some kind of fantasy world?!?!?!?!


At times it felt like it!


Yes - we've had niggles - sometimes things didn't quite work out with the workers. But that was ok - we could look at having back up workers. We didn't need to "take it or leave it". (mostly i used to want to just leave it!!).


I did find it a bit hard at the start - i may have locked control freak worry wart in the cupboard under the stairs, but i had to remember that we were in charge and had to set the pace. I would sheepishly ask for extra hours to be told "you don't need to ask - the hours are there - USE them". 


I'm getting better tho - slowly!
Nearly relapsed the other day - it hadn't quite been pointed out that Peter does college on a monday and we'd need the back up worker to get him there - Nikki, our usual monday support was away on a well deserved holiday.


I got the phone call asking me what time i wanted someone in and said "well, i expected them ages ago".
THe reply was "oooppps -sorry - forgot college today". So we set about trying to sort a time for some support later. I started saying "oh, if it's too much hassle.................."


Got my ear chewed for that!! It's still sore!!


Enable have been great for Peter and for us as a family.
We've needed the support and got it.
Why couldn't it have been this easy years ago when i was in tears and really needed help?????


Loads of times friends would be helpless at the end of a phone call or text message, unable to really do anything to help and slowly watching the car crash that was my life. Getting hassle from people who should have been supporting us, but instead were questioning every move we made and when we did get the odd crumb of support from "officialdom" they would question again and claim there was nothing wrong with Peter that being told to "grow up and act your age" wouldn't cure!!


Yes - those people lived in my life and they were a lot closer that most people know.


Mmmmm - how did i survive without pleading with the men in white coats to cart me off to the nearest loony bin??????


(Possibly the fact that Matthew's sister is one of them people in a white coat did it!!!)


And how some friends still talk to me is beyond belief - it can't have been nice having me around at times.


But i'm looking back on the past year at all the things Peter has done.
Art class on a monday evening (and if anyone knows anyone with loads of money to spare, can they send them in the direction of Projectability so said monday night class can start up again, many people would be grateful!!!)
Days out to the zoo (no luck at trying to get Peter kept in!!) cinema, going off to Perth with Ashleigh to tell others of his support.
And the respite - Skye, Kielder, Dalry (with the guy who mops the floor and the log fire..................!!! I WANNA GO THERE!!!)
And to make sure the budget got spent, another trip to Skye and a trip on the Caledonian Sleeper to London.


Maybe Peter comes home to have a rest!!!


Mmmmm - i don't think i was ever away that much or did as much when i was 21!! College is almost like an afterthought at times!!


I can't believe we've packed all that into a year.
And it has helped us get a break and do things with Louise and Paul.


Below is a link to a film that Enable have made. I know exactly where the mum is coming from - even tho Peter and her daughter have totally different support  needs. All we are asking for is a small amount of good support to help us out. We're not asking for lots of money, or material things. 


Just someone to lean on


http://youtu.be/o1q5k9oqI1o

2 comments:

  1. I'm very glad to hear that you're finally getting the respite that you and Peter need. I'm still at the screaming-for-help stage, and it's good to know that people listen eventually x

    ReplyDelete
  2. It took us a long time, but now it's good - and worth it!

    ReplyDelete