Lilo

Lilo

Thursday, 19 October 2017

Being a carer............

.......... Can be lonely at times.



On the outside, we can look happy and in control. But in reality, we're a bit like ducks - all calm above the water, but feet going like fury in the water to try and keep going!!!



Thing us, not everybody under what it's like being a carer.

Actually, I don't think people really understand until a caring role lands in their life and things change.



Sometimes, you really just need someone to chat with, who "gets" that you are fed up and stressed. That you need to have a good moan about things, without being judged and people get your warped sense of humour, because they too can have a similar warped sense of humour!!!



But the thing is, we are always so busy, it's hard to get together with other carers. It can be a hassle and often you can think of 101 things you need to do.

So it's a bit of a vicious circle.



A number of years ago, a friend dragged me along to a carers support group.

At last, people to talk to.

And for a few years, it was good, getting the support, people to talk to. But things change and I was finding myself coming home more stressed than I had been before. Going along had become a habit and it just wasn't doing it for me.



So I then got involved with a FB carers group.

They are a crazy bunch mainly, I know some of them in real life and others in cyberspace. We can moan at each other, support and generally just try to make sure that we don't get .that lonely feeling too often.



But i was finding that i really wanted some human company. One of the girls suggested I go along to another carers group. I was a bit, thanks, but no thanks. Been there, done that and I don't want to be stressed again.



But I found myself needing to chat to someone about stuff for Peter .



So I went along to the carers cafe.

I even found I knew a couple of people!!!



I'd forgotten how god it was to sit and chat, with a cuppa and maybe a nibble or two.

And it was worth the effort of getting myself out of the house for a bit.



A couple of weeks ago, the MP came along to have a chat with us. He wanted to find out what concerns we had and maybe help out if he could.

Going round the room, those who spoke all had something to tell. No matter who the person cares for, no one has an easy time and often a take would be told and we'd laugh, or say "That's not fair/right". Or others would tell of their experiences on a certain topic.

But the the comment that stopped me in my tracks was a comment from Rosemary. She had been to the GP recently and he asked how she was. Ach, alright she said. So the GP proved a bit deeper and she kind of admitted (as most of us carers do!!) that things were hard and she was feeling it.

The GP said "you know Rosemary, even Jesus had 12 friends to help him!

A lot of us carers just get on with it, because we think it's easier to just get on with it.



So it can be a vicious circle of being lonely, then just not being able to get out of it, because you're doing so much for the person you care for and it's a hassle to get out on your own for me time.



But it's been good the past while getting to know these carers. It's nice when someone asks how you are and doesn't matter if you grumble a bit, because you know that maybe in a week or two, you'll be that listening ear.



So, this time, I'm giving you a are treat.

I've just found out about Nicholas Wells from a fellow carer. This song kind of sums up, for me anyway, how carers support each other. You don't need to be there ALL the time, now and then can be good.



Oh, and the man likes cats. We KNOW  cats suss out the good people. His cats have told our cats he's a good guy!!

But I suspect that they just want some cat treats!!!



Sunday, 2 July 2017

Soaring, tumbling, freewheeling through the Circle of Life

Peter and I have been very lucky in the past 9 months to have seen both The Lion King and Aladdin in the theatre in London. 
Peter loves music and if it's Disney even better. Well, he's a Disney geek who loves a Princess, so who am I to deprive him of what he likes.

There are a lot of "autism friendly" events these days, which is fantastic - families don't feel so pushed out of doing family things and they can get out to the cinema or the theatre and not worry about being judged.

But our autism journey began a LONG time before cinemas and theatres (and even shops these days) did this kind of thing - lights up, bringing your own juice and sweets and so on.

Plus the fact I have 2 other neurotypical children who needed days out and needed mum and dad to do things with them.

(Please don't kick me down and say that Peter must be more able than your child. We all have to do what we think is right for our children and it's a hard road we all walk)

I do believe that much as Peter has an ASD , a rare chromo abnormality and learning disabilities, he has to live in what is really a mainstream world. And that world can be nasty at times, to people they don't understand. So it's nice to know that we . as parents, can choose to opt into a friendly screening of a film, or afternoon at the theatre.

But it's also nice when we decide as a family to go down a more mainstream route and have staff who go all out to help us. 
As a family, we can make a bubble round Peter, to help him feel safe.
Yes, we do have the tantrums and the meltdowns as well!! I remember well one Sunday  going off to New Lanark for the day and he has a face like fizz on him, because HE didn't want to go. Didn't matter what the rest of us wanted to do. He wanted to stay at home.

So it was deal with the fizzy face (by saying you know what, tough. We're a family and we want to do things , like together!!) or go home and have  2 more fizzy face to deal with.

For those of you who have never met my children, you do NOT want to deal with fizzy faces. It's not nice , as the Genie says and there may be blood.

So, like Aladdin on - the magic carpet - says to Jasmine "Do you trust me?", we had to take Peter by the hand and ask him to trust us to take him on the magic carpet and see how things went.

There are times we've soared, times we've tumbled and times we freewheel it, making it up as we go along. Oh, and add in juggling apples, jumping through hoops and keeping plates spinning, you can imagine that at best, it was an adventure, at worst...................... oh, just don't even go there - you don't want the tears and the hassles.

Peter copes fairly well with doing mainstream things, but i'm sure that's because we didn't have the option of any other way and the need  (and want) to go out as a family. 
Paul says he loved it at concerts he was doing, seeing Peter jigging about in his seat, enjoying the music. I think he did once get a "huh" from someone in band, but he just told them that if someone enjoyed the music, so what.

So, we often borrow that magic carpet and go on adventures.

Sometimes it's brilliant.
Sometimes it's ok.
And sometimes it just doesn't work out, but heck, that's life.

As I sat in the Gods at the matinee of Aladdin on the 17th of June, we sat and sang I Can Show you a world. 
But in truth, I think Peter and  Louise + Paul have shown us a world where life might throw up issues, but we work on it.
And as they say in Lion King - never take more than you give.

Life is there to be lived, even if you have to take it at a slightly slower pace!!! 



Wednesday, 14 June 2017

Ohana - some very special people

It's that time of year again.
Rare Chromosome Awareness week, where, by now, you all know, I facebook, twitter, share all sorts of info and facts to help you understand our life with Peter.
And the blog. You have to do a blog. 
Well, I don't need to, but I want to.

Every story in Unique is, well, unique.

I'm sure most of you know a bit about Peter. He has develops delays, an asd, learning disabilities and *something* genetic going on in the mix.
We've just not managed to quite pin down what that something is. The latest bloods, taken about 4  or 5 years ago seem to have been, well, not quite a red herring, but threw up more questions than answers.

But never fear, our new Geneticist has a few ideas. We just need to wait for more bloods to be done and sent off.

We have been involved with Unique for 27  years. 
The support we've had is brilliant. I'm not made to feel I don't fit in because we don't have an official diagnosis. There are others who have been in the same situation as us who get a diagnosis when their child is an adult, so I live in hope.

(Mind you, someone, not on the Unique fb page, but another carers group did question WHY  we were in the group. After all, she said, how can you possibly get matched up with other families. I pointed out that, yes I knew about SWAN - syndromes without a name - but back in those pre internet days, they didn't seem to have the support to give and even though I got in touch, they didn't seem so organised. So we stuck with Unique and have learned so much)

To be honest, this person has been the only negative person and even though she may have thought she was being helpful, it was a bit hurtful. I began to think we weren't as valued but other union families told me to behave. I was Part of the group and most of them wanted us to stay.
I will also say, that on line,both can't always know what someone is really meaning, cos you can't hear their tune of voice.
So note to us all, be kind.

So that brings us to Ohana.
Anyone who has watched Lilo and Stitch will know about Ohana.
Ohana means family.
And family means no one gets left behind or forgotten.
It does not need to be blood family. It can be like Unique, a group of people who are together to support each other.
New members start off asking questions, wondering if life will ever be the same again. (Often that's a no. But it'll be different)
Them you get to know other members. They could stay near you, so you have that connection.
Or their child, young person, adult has some things similar to your child.
Or you find that you have a similar way of coping with things, the same black sense of humour, so you chat more.
Then you find that it's not just you unique child you talk about, but the rest of your family.
Some of the people in the group have helped me when my parents were ill and then died. 
Sometimes, we plan to run off to an island, with supplies, but the realise that our offspring and spouses would get to the island before us and form a welcoming committee!!
Bang goes THAT quiet weekend!!
The support and friendship is what we really need.
Sue, one of the mum's I have met, asks just how Cargill go to meet someone for a cuppa.
Well, Aberdeen to meet her and Sophie, but we nearly met a family at Disney in Paris.(didn't quite work out, they were travelling to the park from the airport as we were travelling to the airport!!)

So it really is ohana. 
Support, friendships and a cuppa.
It's always good

Thursday, 4 May 2017

Elections, voting and living in the Dear Green Place.

As I walked home from the polling station today, I saw one of the things l love about Glasgow.
It's the trees and the knowing that there is plenty of green space in this city for the people to look at, walk in, kids to play in..................
There is a good reason the  name Glasgow  means Dear Green Place!!

Over the past 2 1/2 years, I've seen this view more than usual - because  we've been to the polls more times than usual.

Independence Referendum.
General Election.
Scottish Election.
Referendum on Europe.

Today was council elections and in 4 weeks, ANOTHER  general election.

(has no one told our elected members about voter fatigue?!?!?!)

The  general election was kinda sprung on us by Cruella,  oops, sorry Theresa May.

She says she wants a strong government.
I've lost count of the number of times I've hear those words lately and it isn't really cutting the tomato sauce in my life.

Not when there have been so many cuts to social care, cuts (in real terms) to benefits, people being turned down for PIP, who are ill, unable to walk far - even tho they would love to be able to walk and work and not be dependant on the welfare sate for money.

I was wanting to really have a go at anyone who turned up at my door looking for the promise of my vote.
I wanted to know WHAT they were doing to help the most vulnerable in our society, the people we really should be looking after.
And what about the people who care for them?

I saw this morning that unpaid carers save the government £15.1 million each hour. How true this is, i'm not sure, but given that we get £62.60 or thereabouts for more than 35 hours of caring.................. Go figure out just WHY i'm so mad.

I don't want a pat on the should, I don't want to be told I'm "doing a good job".

I want to be trusted to use my Son's SDS budget the right way.
Not live in fear that (as has happened to others) I will be told i'm not doing things right and as a carer, I am not allowed to go on some of the short breaks with Peter.

(think about this. Much as the workers would LOVE to go to Disney, the time away would take something 106 hours, roughly of his support. Given that he gets 15 hours support a week, how many weeks would we have to go without support to cover this break. Can any councillor , msp or mp riddle that one for me???)

Or being told that we're not allowed to choose who WE want to support our young adult.
Or being told that we just don't get it, so, heck, the council will just do it all for us.

Meanwhile, the person getting the support is wondering just what's going on.

All my son really wants to do is go swimming, to art class or walking group. To go to Karaoke and stun one of the support workers who didn't realise he could belt out the Proclaimers or Dolly Parton with such gusto.

All he wants to do is go on a break, sometimes with Mum - take her on Big Thunder Mountain and hear her scream, or go off to respite to get away from me at times.

But did anyone come to my door to hear my rant?
In a word NO.

Now, I appreciate my reputation and soap box may go before me  , but seriously ......No one. Nobody. Zilch, nada, almost nothing. One letter from the SNP, address to my hubbie.

Excuse me, but there are more people than him who vote in this house.

I got to the polling station this morning.

The 2 guys out handing leaflets really got wellie from me.

I did take my soap box (left the high horse at home!!)

Paul appeared to vote as well and he started laughing - told them that they'd better listen, because I may be a small wummin, but I have a voice and I use it when I get annoyed.

Thankfully, another woman came along and said that SHE hadn't had either leaflet through the door or anyone knocking, so I felt better about that, knowing it just wasn't me.

The SNP guy has got my details and concerns that he is passing on to their candidate for Westminster..

Yes, I did go and vote.
Because even in the 21st century, there are people in this world who do not have that  right.

The right to go and put their mark against who they want.
OR, to spoil a ballot paper in protest, safe in the knowledge that "authority" will come after tham for not doing what THEY consider the right thing to do.

I may be getting fatigued with all the faffing about and having to walk to a polling station.

(oh, jings, what a 21st century, 1st world problem. Having to WALK about 1/3 of a mile to go and cast my vote)

Then I remember 2 things - 1, if I don't cast my vote, I have no right to complain about the out come and 2, people fought long and hard to get the vote for future generations and that fight and struggle is still going on even now in parts of this planet we call home