World Autism Awareness Week – my Sister with Autism

I hope most of you have been made aware through one way or another that the week of 26th March to 2nd April is World Autism Awareness Week. I’ve seen several fantastic fund raising schemes this week to raise funds for the National Autistic Society, which is such a worthwhile cause, so well done to you all!

Autism is a bio-neurological development disability which generally becomes apparent before the age of three. It impacts the normal development of the brain in the areas of social interaction, communicative skills and cognitive function. Individuals with autism typically have difficulties with both verbal and non-verbal communication and social interaction.

So why is this cause so close to my heart? Well because I have been living with a family member with autism for my entire life! I am the middle one of three Sisters and my older Sister, Lindsey (aka “Lindsey Pinsey” or “madam” on some of her stroppier days!) was diagnosed with autism at around four years old. Officially diagnosing her was no easy task – Lindsey is 39 this year, and so back then, autism wasn’t very well known of, and was even more rarely diagnosed. That aside, my Mum visited a total of 26 doctors before Lindsey was finally diagnosed by the 27th professional she met, who was a psychiatrist! Hard to imagine these days isn’t it?

Mum wasn’t very well treated during her attempts to find out what was wrong with Lindsey, which is why she ended up being passed from pillar to post, and doctor to doctor. As Lindsey was my Mum’s first child, many professionals put her worries down to being an overly concerned mother, and when Mum tried to explain that Lindsey would cry all the time and sounded like she was in pain, my Mum was told “well, babies do cry”! The lack of knowledge about autism at this time and the lack of help Lindsey received undoubtedly made a difference to Lindsey’s development. Children with autism do have the ability to progress, but early intervention is key, and unfortunately this is something Lindsey didn’t receive from health care professionals when she needed it most.

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Linzy Pinzy

Lindsey went to a main stream school, I don’t know how she felt about school as it isn’t something she ever talks about nowadays.  It is pleasing to see that there is so much more choice these days for parents as to where to send their children to school in order to get the support they need, and specialist schools seem to be becoming more and more common, which is great.

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Lindsey currently lives in supported accommodation with three friends she has known for a very long time. They have rota’s to get all the house jobs done, including the washing up and cooking the dinner, but there is always someone there to supervise them. It is great that she is part of an arrangement which encourages her to be as independent as possible every single day. During the daytime she catches the bus and goes to a day care centre where they undertake all sorts of activities, including planning for the annual Christmas musical that they perform for friends and family at the beginning of December!

She comes home to visit once a month and stays at Mum’s house from the Friday to the Sunday and very recently has started spending one of those nights alternating between me and my Sister’s houses too. Until she started doing this I never really understood what Mum meant when she said it was tiring having Lindsey at home, but it really is! You have to keep an eye on her all the time, not because she will hurt herself but because she’s off wondering and opening cupboards and drawers and finding treats I’ve hidden away for special occasions! And don’t even attempt to leave the washing machine and dryer full of clothes! She will be in there trying to sort them all out and finish them off! Not got any washing liquid to finish the washing? Lindsey doesn’t care! Not got enough to put a whole load in the dryer? Lindsey doesn’t care! Very expensive designer item that can’t go in the tumble dryer? Lindsey doesn’t care! In the dryer it will go! Like I said – madam!

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This isn’t because she wants to upset anybody, it is because it is simply part of her routine. This is what she does when she is at home, so the small fact that it is someone else’s home is of no matter! The first weekend she came to stay with us, we said we would have a takeaway as a treat. I told her she could choose and she said she wanted a KFC and so it began that every time she came to stay with us for the night, she had to have a KFC as it became part of the routine. At my Sister’s house it is fish and chips! I think she’s got us wrapped around her little finger!

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Big sis and little sis!

We haven’t started doing it this year yet because the weather has been so bad, but when she is home for the weekend and the Spring and Summer starts to arrive, we do take her out on day trips too. We’ve been to all sorts of places over the years but she especially enjoys the farm parks with all the animals! She seems to enjoy herself when she is there but doesn’t ever say much at the time (or for several months after that for that matter!)

I think the lack of communication is the hardest thing to cope with. Even if she reacted badly or inappropriately to something, it would make things so much easier if she would talk to you about it, tell you how she felt, rather than the emotions building and building and then eventually turning into a meltdown. We have had some bad experiences of visiting some places which were either louder than we had expected, or involved a lot of singing and dancing and crowds of people. I don’t want to dwell on them because, even after all this time, my Mum, my Sister and I do find them overwhelmingly upsetting – in particular, if the meltdown is at a place Lindsey had asked to go to in the first place! Even after all these years we are learning the hard way about things Lindsey does and doesn’t like. Lindsey reaching meltdown is not a good position to find yourself in – she has violent and wild outbursts and will run off without considering traffic or people around her, and she is so incredibly strong! There’s no chance of physically moving her or restraining her in these situations so she doesn’t hurt herself once she has reached this stage. Luckily, as we learn more about the things that Lindsey dislikes, these meltdowns have become far fewer.

The second thing I find really hard is how Lindsey compartmentalises every aspect of her life. If it makes it easier for her to get through every day then of course this is fine, but she gets very anxious and upset when two separate sections of her life cross over. She has particular rules and behaviours for her “life” in the supported living house and other rules and behaviours for her “life” with us. So, in a nutshell, some things are acceptable in one place and not the other. This is hard to deal with when she merrily goes on holiday and to the cinema with her friends, but finds these exact same situations with us to be too stressful and upsetting. It’s hard to deal with but as long as she is happy, I should be happy too.

I think it’s great how things have come along in the past three decades, and how autism is now a globally recognised condition. Check out some of these interesting facts about autism:

  • As if it isn’t bad enough that autistic people have to suffer with autism itself, autism sufferers often also suffer from many other medical conditions, including but not limited to asthma, allergies, epilepsy, digestive disorders, continual viral infections (Lindsey gets these a lot), and feeding and sleeping disorders.
  • Lindsey is rarer than most – autism is diagnosed in four times as many males than females.
  • Autism is increasing – it is reported that in the United States, as many as 1 in 68 children will be affected by autism.
  • Around 40% of children with autism do not speak at all. Around 25-30% of children with autism have some words early on and later lose them. This was very much Lindsey – when she was younger she was the typical bossy older Sister and on some occasions you would struggle to shut her up! As she has become older, her speech has become less and less, which is very sad.
  • Autism greatly varies from person to person, and no two people with autism are alike.
  • Autism is the fastest growing developmental disorder, yet is the most underfunded.

So if you would like to learn more about autism, or donate to such a wonderful cause, you can find more information from the National Autistic Society here.

There is a very interesting video on the home page which highlights what autistic people deal with each and every day of their lives – it is certainly worth a watch!

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Gloucester Cathedral

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I am very ashamed to say that I have lived in Gloucester all my life however have only visited Gloucester Cathedral on three occasions! The first occasion doesn’t even really count as I am pretty sure I was only in junior school, and so I don’t remember much of it!

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The cathedral originated around 678/679 with an abbey which was dedicated to Saint Peter. The abbey was later dissolved by Henry VIII. The cathedral as it currently stands was build in Romanesque and Gothic style between the years 1089 and 1499.

 

 

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An interesting fact – one of the stained glass windows in the cathedral shows one of the earliest images of golf! This window dates back from 1350 which is over 300 years before the images of golf appeared in Scotland.

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The beautiful nave

As with most Cathedrals these days, there is no entrance fee and tickets aren’t required, however there is a donation box for you to leave what you would like to show your support.

If you would like to take photos inside the cathedral – whether this be with a camera or on your phone, you need to buy a ticket for £2 and you will be provided with a sticker to wear to show you have paid to take photos. I thought this was a really good idea, until the lady serving me said that they often find this policy to be abused, particularly by those taking photographs on their phone, which I thought was awful!

£2 to take photos of this incredible place was well worth it, and it’s nice to know all of this money will be put back into the restoration and upkeep of the cathedral.

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Whilst inside you will come across the Stained Glass Windows of the Thomas Chapel. The glass is the work of Thomas Denny and was installed in 1992. The windows are based on Psalm 148 – the right-hand window reflects the worship of the elements, and the left-hand window reflects the worship of all God’s creatures.

You may find Gloucester Cathedral to be very familiar after seeing it appear as a filming location for three of the Harry Potter films, Sherlock Holmes (The Abominable Bride scene at the end where Sherlock and Watson are in the ruins of a desanctified church) and the Doctor Who Christmas special!

The beautiful cloisters of Gloucester Cathedral are particularly memorable from the Harry Potter films!

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The stunning fan vaulted roof Cloisters – as seen in Harry Potter (first, second and sixth film)

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Inside Gloucester Cathedral you will find some famous historical tombs, including;

Osric, King of the Anglo-Saxon kingdom of the Hwicce.

Osric is claimed as the founder of two monastic houses, one at Bath (now Bath Abbey) and the other here at Gloucester Cathedral. 

Robert Curthose, Duke of Normandy and the eldest son of William the Conqueror.

He died in 1134 at Cardiff Castle, a prisoner of his youngest brother, King Henry I. The exact place of his burial is difficult to establish, however legend states that he requested to be buried before the High Altar.

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King Edward II.

Born in 1284 and reigned from 1307 to 1327. The King’s funeral was held on 20 December 1327 and his coffin was placed under the floor. Sometime afterwards, presumably on the orders of his son, King Edward III, this stunning tomb was built over it. The canopy was carved from local Cotswold limestone and the base is covered with Purbeck marble. The King is depicted as a saintly figure with angels at his head; he holds a sceptre and an orb – the first time the orb appears on an English royal tomb.

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The stunning vaulted ceiling

Once you have had a good look inside,  I highly recommend you take part in one of their tours to the crypt! The tours run quite often and you can’t go down there unsupervised because it is dark, but my sister and I paid a visit and absolutely loved it!

Our tour guide was fantastic and we learned so much about the history of the crypt, and of the Cathedral itself. You can buy tickets in the shop at the front of the cathedral – tickets are £3 each and the tours last around 20 minutes.

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The crypt at Gloucester Cathedral is one of very few Norman crypts in the country and was used for praying, funerals and even to hide valuables during times of war and conflict. If you search for information about the crypt of Gloucester Cathedral you won’t find much, basically because so little is known about this mesmerising place!

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We are usually very lucky with the weather on most of our family day trips out, and our visit to Gloucester Cathedral was no exception! We chose a beautiful bright and sunny day which meant we could get some great photos of this stunning building.

The only downside was that we visited when there is vast building work taking place outside the front of the building to design a new garden, so I had to do my best to crop the diggers and high fences out of my photos!

If you are hoping to visit when there isn’t any form of building work going on then you will have a while to wait! Project Pilgrim is a huge project which is taking place over an approximate ten year period!

The project is split into several different phases as follows:

External Works

The external re-landscaping will create (amongst other things) level access to the West door, provide more disabled car parking spaces and add a green space with plants and trees.

Internal Works

This phase will include the creation of a new glass entrance lobby and glass cloister door, and a new welcome area which is going to include a lovely glass model of the Cathedral to help visitors navigate their way around – I’m looking forward to seeing this!

Lady Chapel

This 15th Century area of the Cathedral will have major restoration and conservation work done which includes new lintels, new lighting, cleaning of the stonework and stain glass windows and installation of new radiators and underfloor heating.  Work is also being done to the external walls of the Lady Chapel including restoration and conservation of the existing stonework.

Solar Panels

The solar panels were added as part of the Church of England’s “Shrinking the footprint” campaign. The aim of the campaign is to reduce the Church of England’s carbon emissions by 80% by 2050! The solar panels were installed in November 2016 and will reduce Gloucester Cathedral’s energy costs by 25%.

There are also some lovely shops and tea rooms in the surrounding area of the Cathedral, including a Beatrix Potter shop which is well worth paying a visit! The Cathedral is also within walking distance of Gloucester Quays where you can find a shopping centre, loads of restaurants and brilliant themed food fayres throughout the year!

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