Lilo

Lilo

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

Monday, 19 December 2016

Who stole half this year???

......... And can they give it back to me please. I feel as if most of this year has gone by in a blur.

It's been not too bad, weddings, graduations, engagement parties and a few weekends away.

Oh and trainee ninja duties!! Christopher comes along to annoy the cats, trash the living room, get a taste of rosti and then whirls back out, leaving gran clutching the gin bottle!!!!

In between all the goings on, we met our new Geneticist, who explained more about Peter's last lot of results and just why they don't seem to be the cause of his problems. It's now when, not if a new blood test is available to help us get to the bottom of it all.

Peter has enjoyed not only his respite, but the weekends that we've been away.
Disney was brilliant, as usual.
Lion King - we want to go back.
And Harry Potter, just brilliant .

Just need to keep convincing the powers that be the money is well spent and gives us both a break.

Mind you, I may be banned from going away. David Bowie died when we were in Disney and Fidel Castro popped his clogs when we were in London.
Mmmm. It wasn't me, honest!!

The tree is up, the presents are wrapped and the freezer is full of food, so we're sorted.

Have a good Christmas and a peaceful new year.

Wednesday, 31 August 2016

It's that Ohana thing.........

As you all know, we love Disney and Peter enjoys the films.
Ok, I enjoy the films as well!!!
One of our favourites is Lilo &Stitch.
We've talked before about Ohana and it being about family and no one getting left behind , or forgotten.

Recently, we've had two different lots of Ohana, showing both times that Ohana doesn't always need to be blood family and this family you have around you can help support you, keep your spirits up, help you and well, basically be there for you in good AND bad times.

Our first lot of Ohana was at Paul's Graduation.
There were various degrees being conferred that day, but the class we really wanted to cheer was the BMus (Hons) class.
Paul joined the class in 2 nd year and quickly got involved in class activities. Rehearsing on his own and with others to produce music, singing and just enjoying the experience.
It was hard at times. Early morning travelling to Edinburgh, evenings spent travelling back to Glasgow, either sleeping or doing some reading. During the winter months, he barely saw daylight!!

But the class supported each other, helped out at earth others recitals, encouraging each other and making themselves into a family.
It was a brilliant day.

Or 2 nd lot of Ohana was a couple of weeks ago.
We had arranged to meet up with a family we know from Unique. We have been chatting/messaging each other on FB and we decided to meet up in Edinburgh when Jenny, Steve , Emma and Jenny's parents were up for the Festival.
So we were up early. Nay, almost the middle of the night so we could get to Edinburgh on time. As usual, our journey was interesting!!
 An older woman got on the bus about half way to Edinburgh. She was having a wee bit of trouble sorting her things, so I asked if she wanted a bit of help. Oh, she says, could you, that would be good.
So she got settled and on we went.

This lady wanted to get off in Princes Street, so again, I asked if she wanted a bit of help.
We got her sorted and went o to find the bus stop she needed to get the next bus. As we looked, the bus went running by!!
She was so apologetic, she didn't want us to be late for our friends, but we got her to the right bus stop before we went on our way.

We met Jenny and her family where we'd arranged and headed off to get food.

It was great meeting them in real life and chatting and munching and swapping stories and photos of our cats!!!

Again, Ohana. Family, caring, supporting, having a giggle. It was a brilliant morning

Thursday, 16 June 2016

Scary Places

I don't usually blog twice in awareness week, but this time I will.

I am also going to assume that most of you know the back story, or at least the bare bones of it, or have picked details up along the way.

For me, the time around Peter's diagnosis was one of the scariest, loneliest places I have ever been in.

I had just about convinced myself (by June 1990), that there was nothing really wrong with Peter, I was just a neurotic, tired mum who was looking for excuses.

(My gut was telling me otherwise, but i didn't listen I chose selective deafness so as not to hear the howling that was going on)

So we were going back for routine appointment at the hospital. They had told us of one thing they had picked up when Peter was born, so they would follow it through, rather than get our GP to do it.
At the appointment, the Consultant was looking at Peter's ears and his hands and talking about them.

Mmmm, what medical school, i thought , did you go to - you are meant to be looking at the bits between his legs!!
So, it was decided that bloods needed to be taken, so off we went to get them done.

Walked into the neo natal, introduced ourselves to the doctor, who didn't have a clue WHY we were there.
So she said to another doctor, who replied "oh, yeah, i know about them, but I'VE got to do a patient transfer to sick kids.

Oh cheers pal, i know you're busy, but did you not think to give someone else the heads up about us???

(this is the point where i remembered this guy being on the ward when we were in, another mum was worried about her baby, he was called in, wasn't happy about it and then muttered "first time mothers" as he walked out of the ward)

I think it is Mya Angelou who said "People may not remember your name, but they will always remember how you made them feel. I will add to that and say if you remember they way the made you feel AND their name , things are either VERY bad, or  VERY good.

The nice doctor asked me when we were coming back to clinic. I told her i didn't have a clue, but we were due to have a check up with our GP in the next couple of weeks.
So she said that she'd get the results to the GP

By Saturday morning, we had a letter asking us to come in on the Tuesday to discuss the results (all these years later, i wonder how they got them back so quickly).
Typical. get the letter on a day you can't get in touch to ask.

So, my mum and brother came over to look after Louise, we went to the clinic.
The doctor was over an hour late getting there , so we sat and waited our turn.

When we went in, he told us Peter had Prader Willi Syndrome and rather gleefully (i felt) told us this was the first child he had diagnosed this year and the youngest he's ever diagnosed.

Oh - forgot to say - you know Dr "don't hassle me, i'm doing a transfer"?

Yup, you got it. It was him.

So, i began that scary lonely journey.

We got home (how, to this day, i do not know)
My mum's reaction was to tell me that Matthew had had a shock, and i was to go and make him a cup of tea!!

Of COURSE, i hadn't had a shock - i just knew i was the person who would be dealing with it!!!

(many years later, i found out that my mum had said she would take Peter and look after him. Thankfully, Matthew had the good sense to say , umm - NO)

SO, then a blur - going to the GP, the one who did the baby clinic was on holiday, but, i was told, she had got the results just before she went off - and had to ask the trainees what they knew about PWS.

I felt soooo bad that she and her family were on holiday and i had ruined it for her .
It was worse that her Husband was a GP in our practice as well.

(this is the point where i say that if i ever win big on the lottery, i owe them big time in the holiday stakes)

Waiting for the genetics/neuro appointment, we were having to tell friends and family.
And get backlash from both mums that it was obviously the other family whot had done it.

Mmm - at least they didn't deny the existence of chromosomes in the family, but it was a close run thing.

Three days before our appointment, I was in a car crash with my dad and Louise.

This just got better and better.

So when we went to the hospital, my brain was gone. Along with my sanity and i really didn't want to be there.

It didn't help that the neurologist straddled that line between genius and madness.
Nay, he merrily wandered over that line several times in an appointment, much to my sorrow, because you could never get him to give you a straight reply

SO, there was me, on that lonely horrible journey (yes, Matthew was as well, but we were both so worried we didn't realise it)

They told us that no way could Peter have PWS.
Mind you, that was one thing that Doctor Mad Genius did explain to us, but i can't really remember what his explanation was. I do remember something about if he did have it, he wouldn't have lived.

(oh, yeah - make us feel good pal. Look, i know you're a mad genius, but give us a break and get someone to translate this into non medical jargon, so i might just begin to understand)

So, even the experts didn't have a clue, so shoved along that lonely scary path a little bit more.

When we got back  to my Mum and Dad's, we started to tell them that Peter didn't have PWS, but my mum cut me off before i could say any more and say "oh, great, he's fine, nothing wrong with him. Can you go and phone out GP, you dad isn't well and i think it's after effects from the crash"

How i made that phone call and didn't break down, i have no clue. I was trying to tell my mother that one of her grandchildren was going to need a lot of support as well as us , but she chose not to hear that.
(even now as i type, ....... my face is wet)

But somewhere in that lonely scary time, i got Edna's phone number.
My memories of that conversation we me trying not to cry and her telling me that i didn't do anything wrong, it wasn't my  or Matthew's fault and that we would eventually find things out.

Those were some of the most comforting words i ever heard.

Slowly, we got to know other Unique families.
Our children/young adults/grown ups may all have a different diagnosis.
But one thing we do very well is support each other.
And we try to raise awareness about Unique.

We got to meet some of the families at Conferences and over the years have made some VERY good friends.
They start out as people wanting to know about the chromos issues and somewhere along the line, some of them turn into friends who
a) get you Murray Gold's autograph for your youngest son who loves music and Dr Who. If you don't know who MG is, you're a heathen!!!!

(alright, it'll tell you - he writes the music for all the new Dr Who shows)

And

b) They tell me to get my big girl pants on and deal with things if i get stroppy!!!

 Now, when it comes to support, i really don't think you can get much better than that.

I'm not going to name names (well, apart from Jenny, Steve, Emma and Sam and muchos thankos for the autograph - i doubt my body could have coped with a Time Vortex Manipulator to get me to the Albert Hall that day!!)

The other names - well, i have mentioned them before and have done so this week already. Most of them would say that they were doing for me what i would do for others - being that supportive person there, ready to help.

Now, what Edna  and we didn't know was that it would take over 20 years to actually  get to a point where the get something like a genetic diagnosis. Even tho Peter had a lot of markers, it's only in the past few years that the techie stuff has caught up.
But in those years, i have thrown curved balls, asked questions and always had some info back - even if it was "you know, we hadn't thought about that ".

So another (more personal) take on Chromosome Awareness



Monday, 13 June 2016

Awareness, fun and support

By now, most of you will have had at least one tweet or FB message from me about Rare Chromosome Awareness Week.

Those who haven't, well, here's your chance to find out more !!

As you know, Peter has a rare chromo disorder.
It took many, many years  to find out where the problem was and many arguments, tantrums, tears to get us to that point.

July 1990 was when we first found out that Peter had "something" genetic going on. (it wasn't till many years later I found out these things had been noticed at Peter's first check, but we were never told)

The initial diagnosis was chucked in the fuckit bucket early on, but my correspondence (yes, this was the pre dark ages when t'internet didn't exist and FB and twitter didn't FB or tweet!!) - lead me to a lady called Edna Knight and a group called Unique

I remember the phone call to Edna well.
Me upset, her listening.
She said to me " Julie, whatever has happened with Peter, it's NOT your fault".
She explained that most times, things just happen and we have absolutely no control over them.

And so began a journey of learning about chromosomes, getting to know  people and getting (and hopefully learning to give) support to others.

I won't bore with all the details of our journey - but we've had conferences with our Unique Family, where I saw how much we were cared for and how much other families appreciated the care we gave.
One or two vivid memories - of meeting my friend Sue for the first time.
We had been e - mailing and were meeting up at the conference. I went round to her room to say hi, to find that she'd had a bit of a rough journey down.

So what does a girl do???
Tell her pal to sit down while she puts on the kettle and askes if she wants tea or coffee!!!!

Sue reckoned my bossiness was just what was needed at that time and our standing joke is "just how far will we go to meet up with People for e hot drink!!!"

Another memory was one evening sitting in the bar. We'd had a bite to eat and Lou and Paul went to reception to see what was going on. A family were there and Lou started to talk to the little girl (she was the one who had the chromo issues). The girl took Lou's hand and obviously wanted to go for a walk. Meanwhile, her brother was a bit worried about this - so Paul said "hey pal,we can't let those girls go off without us annoying them - come on let's do it".

The dad came into the bar and sat down with me - he asked if the red headed  girl and her brother were mine. I automatically started to apologise, thinking something had happened. He laughed and said no and told me what had gone on. He thought it was great that a couple of older kids had been so kind to his children

So - Unique, well. what do they actually do?

They have a database of genetic abnormalities that they can reference.
They put families in touch with each other for support.
They have written info leaflets on the more common rare disorders.
They help with genetic research - helping find people they know who may want to be part of the research.

And, with the help of some funding, they organise conferences and family days.

We had one this weekend in Glasgow.
Just getting together, chatting to people, making new friends, catching up with old ones and a bit of food in between.

And we find that while there are vast differences in our children's problems, they are actually more alike than we realise.


We also compare notes on our holidays - our specialty is Disney!!
And these are two of n my fav pics from our holiday in January - opening the park with our new friend Sienna


So now, what i'm asking ,would you care to pop by our website

    www.rarechromo.org

Join us on tweet

   @unique_charity


or pop over to our FB page

   Unique - Rare Chromosome Disorder Support Group.

We'd love to meet you.

And please - pass the message on!