Well my weekend away was good but i have a sunburnt nose that is all shiny and red...It's not sore and am covered in even more freckles and am all pink too...Needless to say we did have nice weather but yesterday was very hot and very very sunny...Being in the middle of nowhere then suntan cream wasn't an option...No i didn't have any long lies as brekkie was at 8.30am and the programme for the day started at 9.30am...We were doing lots of workshops and discussions on various issues...To share our feelings and reactions to things and how we coped and dealt with tons of issues.
Am not going to go into details as that would be wrong...What i will talk about is the mechanisms that we can try to create or put in place that can help all of us with dealing with things...We discussed meetings first of all...How we felt before a meeting, during and after...Am afraid that i really don't feel that bad about meetings or nervous about them really...But as one of the facilitators pointed out that could be because am so far down the line now and have been dealing with all kinds of meetings with all kinds of professionals for 16/17 years now for G and for M since he was about 8 months old that am used to them...So much of what i said was things the facilitators would advise to do to help...Oh and i have now come to a what i think may possibly be the reason behind the constant moans about G's appearance...As you all know from what i write he is very capable academically...So they don't really have anything to do in that area for him as such...So i think instead of focusing and helping with the other issues he has that i am concerned about she has to find something to moan about...Possibly to justify to herself why he needs a place in the base...So she picks on his hair and his clothing because she has nothing else to pick on that could be 'bad' and he would need 'help' with...Does that sound plausible???? Anyways i digress as usual...After we all said our piece about our feelings and how we deal with meetings we discussed something called 'Circle of Friends'...Circle of friends is a good tool IMO but it can also be quite emotional trying to think of one and to try and create one...Also we don't need one just for ourselves but for our disabled person in our lives...I have always found it incredibly difficult to try and even just create one on paper as an exercise because there are so few people in my life as such now...But as i had to phone home i missed part of it and didn't have to do one as such as an exercise :o) But i do really need to create a circle of some kind regardless of how small it is...Mainly because i am a single parent...And i can't include family in an area of the circle that i really should have them in because they live too far away...It is very important that your circle know what YOU WANT for your disabled person and what the disabled person wants and NEEDS...The circle can step in when you as the main carer fall ill and make arrangements for more outside care or stuff like that with the professionals...You also need to include on the outmost ring of the circle the people who are PAID to be in your life...Like doctors, specialists, teachers, care workers, respite workers etc...The innermost people in the circle need to know who they are...I guess even though my circle is miniscule when i had the emergency hospitalisation over my gall bladder nearly 3 years ago they kicked in and made phone calls and made social work listen and make arrangements...Not that what social work actually organised was that great but at least the 3 closest friends i have helped K out with that big time :o) Your circle could also give you a kick up the backside so to speak if it is a disabled child you have...Like pointing out that you are still dressing them like a very small child even though they are now a teenager...Regardless of if those kind of clothes are easier for them to wear...Am sure my small bunch of friends and K would have kicked my up the backside if G's hair was making him out to be even more different than he is <g>
Another thing we discussed but briefly is Person Centred Planning...Hopefully if funding can be got then a couple of courses on it will be run which i will definitely go on as it is something i am very interested in...Small view on PCP below
Person centred planning is:
A powerful way to support POSITIVE chane
A different way of working together
A better way to listen and respond to people
Different for different people
An invitation to personal commitment
Working towards inclusive communities
For anyone who wants it
Person Centred Planning is NOT:
A cure-all
Just coloured posters instead of paperwork
Just a more sophisticated assessment
A standard package
A service routine
Just a better way to put service packages together
Just for those who are 'ready'
It's about MOVING FROM planning which is owned by professionals TOWARDS planning which is owned by the person and those close to them
It's about MOVING FROM trying to fix people and waiting until they are ready TOWARDS creating opportunities now and providing support as/when needed
It's about MOVING FROM people being surrounded by paid staff, bound by the service TOWARDS people having friends and strengthening community connections
It's about MOVING FROM packaging people TOWARDS inividual and unique arangements
It's about MOVING FROM designing a service solution to last forever TOWARDS expecting services and supports to change as the person changes
It's about MOVING FROM services trapping individuals TOWARDS services being a bridge into the community
Basically in simplistic form it is all about looking at our disabled person we care for as an INDIVIDUAL with INDIVIDUAL needs and catering for those needs...About looking at them as an individual and looking at them as a person and NOT the condition they have and lumping them into a set category because of their disability...After all we are ALL of us INDIVIDUALS with different needs, wants and dreams...What works for one doesn't always work for another regardless of if they have the same condition...I know that extremely well because i have two sons both with same/similar condition on paper who have very very different needs, abilities etc...I really want to go on a course about it so i do hope funding can be found to run one...The person i know who tries to get courses like this, conferences and other things like the weekend away doesn't believe in parents/carers having to pay an absolute fortune to learn all this info and be trained in anything...Her preference is FREE as opposed to charging but if a charge has to be made then as small as possible...Professionals get trained, parents/carers don't get trained...We have to learn or find out for ourselves...Often after a disagnosis is made you are left to go away with no info on anything...Not even info on local support groups, places you can go for help etc...That hasn't changed in all the time that G has been diagnosed...It's shocking really and it wouldn't be that difficult for say a leaflet to be made up and handed out to a parent at least...With phone numbers, addresses, websites etc...Some of the people there at the weekend didn't even know the carers centre existed as no-one had told them...Quite frankly i find that disgusting and unforgiveable...If you happen to be a carer then your nearest carers centre can be a goldmine of useful information for you.
On sat i ended up in tears in the afternoon about one thing we had to fill in...And i still feel really stupid about it...We got handed a large sheet of paper with 4 sections on it to fill in...And we were only allowed to write in POSITIVE things...You know glass half full and not half empty...Or in my case i always see the glass as empty or at the most a quarter full...So first section was ROLES...Ok that wasn't too bad...Mum, chief bottle washer, chauffeur, general dogsbody and unpaid counsellor...Next was SKILLS...Good listener, give good advice, can drive, artistic...Next section was PASSIONS & INTERESTS...That i found very easy...I may not always have time for them but i managed to write a fair few in there...Lastly was WHAT PEOPLE SAY about you...This is the one that i just couldn't fill in and ended up in tears over...That funeral last week was still on my mind...To me i don't have that many people i know to say stuff about me and why would they say things to my face...But i did manage to put down good listener and good at councelling...Eventually i managed loyal friend as well...But i was really sobbing by then...So two of the others came over and plonked themselves on the floor beside me...One grabbed the sheet and wrote the following: Motivator, Selfless, Dedicated, Compassionate, Outgoing (HAHAHA), Good sense of humour, trivia queen...The hahaha is me adding that just now btw...Am not really it is a front...I did come across on the friday as very confident but i did point out on the fri that i am only confident when it comes to meetings etc to get what i want and what i believe is right for the boys...In every other area i am severely lacking in confidence and have absolutely no faith in myself at all...As i always say who counsels the counsellor...I am pretty good at giving sound, workable advice to others but am pretty bad at heeding my own advice...I ALWAYS come last at the very bottom of the pile and i ALWAYS put everyone else before me...And K has given me a right good telling off about that for years and G is doing it now as well...But hey i did buy clothes for me last week...I spent far too much on new clothes for me last week...I did buy K a new top though because she was such a star at coming home to look after the boys for me to go away...And i refused to take my change back of the money i had left with them for stuff over the weekend...They went tenpin bowling on the sat and the boys paid for themselves!!!!...She managed to get them to clear out a lot of rubbish from their rooms!!!!!...I've been nagging them for months about it...Oh well big sis is easier to do things for than mean old mum <g>
Am not going to write anymore about the weekend just now i will keep some for an entry tomorrow and possibly the next day...Spread it out a bit instead :o) But can i just ask how many of you have seen a squirrel for real...Grey or red but preferably red...You'll find out why in another entry :o)
Toodle pip tc