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Wise Owl Feathers - The Newsletter for Adults with
Hello and Happy New Year!
I hope you all had a very merry Christmas and enjoyed some festive time with friends and family. Now that all the decorations have come down and the weather is a bit cold, it’s a good time to curl up on the sofa and have a read of the Wise Owl Feathers and maybe a nice hot cup of tea. There’s a quiz and a wordsearch to keep you busy as well as plenty of great stories to read.
Lucy has written about all of the things she likes to do and how Sheila at PWSA has helped her out.
Millie was interviewed by her sister about the 16+ and adult Zooms that we have, including quiz nights, bingo nights and crafting sessions. If you would like to get invitations to the monthly Zooms, drop me an email at rconsterdine@pwsa.co.uk
Ryan has given us an interesting article on places to visit in Norfolk.
Thanks to all of you who write stories and articles for the magazine – we love to hear from you, so if you have something you would like to share, please get in touch and send us your news. Don’t forget to include some photos too.
Summary of our news magazine
In the magazine for parents and carers, we have been looking at Prader-Willi syndrome in more detail. Did you know that there are three different sorts of PWS?
We all have 23 pairs of chromosomes. In these pictures, the pink ones are chromosomes from mums and the blue ones are from dads.
In PWS, part of chromosome 15 is affected in one of three ways:
1. Paternal deletion - A tiny bit of the chromosome 15 from the dad is missing.
This is the most common type of PWS, affecting around 65-75% of people with the syndrome.
2. Maternal disomy (or UPD) – Two chromosome 15s come from mum and none from dad. This affects 2030% of all people with PWS.
3. Translocation/Imprinting – A tiny bit of chromosome 15 breaks off and gets stuck to another part. This type only affects 2-5% of people so is very rare.
We have also been looking at skin picking, which I know lots of people with PWS struggle with. It can be difficult to stop doing it and sometimes you do it without thinking. If this is something that you need help with, please call the support team and we can give you, and your parents or carers some helpful tips.
We have an article about the Government’s ideas to make support better for adults in England. They want to do three things:
1. Help people to choose their own support so they can live the way they want.
2. Make sure that people get really good support that works for them.
3. Make sure that support is fair for everyone and easy to get.
If you want to read more about this, you can visit the Government website where you will find an easy read version. The link is: https://www.gov.uk/ government/publications/accelerating-reform-inadult-social-care-in-england
At PWSA UK’s Annual General Meeting, our Chairman Danny spoke to everyone about the important work we do to support people with PWS and their families too. We want to make sure that we:
Support adults and children, with PWS, and their carers and families
We get enough money to support people
Work with other organisations that offer support to people with PWS
You will soon start to see some changes to the ‘I Have PWS’ page on our website to make sure that we are giving you the best support we can. So watch out for that!
Christopher cheers on Aldershot!
Christopher Bigaignon tells us about his trip to see Aldershot FC: Aldershot Football Club gave Surrey Action for Carers free tickets to watch them play a game. So, I went to watch a game with my mum.
I enjoyed it so much that I am now an Aldershot FC supporter and I watch them play whenever I am staying with Mum.
After the last Owl Focus Group meeting, I went on the bus to watch Aldershot play-and they won 2-1. Hurrah!!
I get very excited when Aldershot score a goal!
Lucy shares her positive news
Hello everyone, I'm Lucy, I'm 18 years old and I live in Scotland in a place called Auchterarder. I just wanted to introduce myself because I thought it was a lovely thing to do. I got asked by Sheila to write about my positive news in the PWS magazine as I have been doing extremely well.
Thanks so much Sheila for letting me be part of the magazine - it means a lot to me, as you all might not know that she has been part of my life since I was in secondary school. Sheila has helped me with my PWS struggles and emotions to come up with a better environment for me. I struggled and I needed a little bit of help to make things better.
I attend judo once a week on a Tuesday. I started judo when I was eight years old. My dad thought it would be really good for me to build my strength up and make my bones nice and strong. I am working towards getting my brown belt and sometime in 2025 I will be working towards getting my black belt. Before COVID, I went to Cardiff to compete at the British disability judo competition and brought back a silver medal.
I go to Perth Dolphins disability swim club every Sunday and I am one of the strongest swimmers in my swim club. I will be competing with my team at a swimming competition in Dundee next April. I go out for a cycle with my stepdad every Wednesday. I go to gym with a PT instructor that my mum kindly organised for me and I love it, and I go horse riding. I have a lot of independence in outings with my support workers four days every week. I love it. My mum gives me independence so I can be like others without PWS. I am always keen to achieve my goals every day when I am out. I have a bank card which is a Go Henry card so my mum puts the exact money on my card. I am doing so well with the Go Henry and my mum is proud of me. I get a taxi by
myself and a support worker gets me from the other side. I volunteer as a young leader at Brownies every Thursday. I love being a young leader - it gives me a responsibility to have the opportunities to do things and help. I learn how to run the games and help the leaders. I helped at the Brownie sleepover, so I got to stay overnight and I loved it.
I go to college for half a day every Thursday with my support worker. I am absolutely enjoying college. I feel it's a much better environment for me than being at school because I was in a mainstream and it was extremely difficult as I had loads of freedom because I didn't have a one to one, but I did eventually with the help of Sheila. The course I'm doing at college is animal care I'm really enjoying it as it's a really fun course. One time, a three-year old cockapoo called Buddy came to visit my college. We got to learn to do different dog tricks with Buddy. We are planning to visit pet shops too. I did a poster all about elephants because they are my favourite animals and I compared it with a parrot. What I'm learning now is the populations of wild animals. I am loving it and it's almost going to be my second year at college soon, but I don't know what I'm going to do.
I have a meal deal on a Friday and my mum trusts me to make good choices. I attend Kinnoull day opportunities every Monday and Friday with support. I love it. I do fitness class, bingo, dancing, Makaton and karaoke. I have applied for Britain's Got Talent for 2024 and I will find out in February if I have got through to perform on stage. I love singing.
Sandy Balls community weekend
It was great to see many of you at our PWS community weekend at Sandy Balls in the autumn. Can you spot yourself or your friends in the photos?
Our Positive News
Millie talks about the Zoom quiz
In an interview with younger sister Kaitlyn, Millie talks about the Zoom quiz that PWSA UK organises for adults and those aged 16plus with PWS
Would you recommend going to the quiz and why?
Yes, because it is fun and exciting. The questions can be a little bit difficult, but it is fun to think of the answer.
What was your favourite part of the quiz?
Meeting new people.
How often do you go to the quiz for adults with PWS on Zoom?
Every time it is on
How did you find out about the Zooms for adults with PWS?
When I got to 16, I filled in a form for free membership and now they send me an email about it. People can look on the website to see when they are or email the support team to find out.
Do you have to be very clever to take part?
No, everyone who is older than 16 can join.
How many new friends have you made through the zooms for adults with PWS?
I have made 4 new friends.
What else have you done apart from the quiz?
I have done bingo and I have done crafts where we make things together and Ruth sends out the instructions of what we need and how to do it first. I went on the family weekend to Sandy Balls and met my new friends.
Places to visit by
Ryan Inwards
On 9th October, I went to Norfolk with my friends from the home. We stayed in a caravan on the Haven site called Wild Duck near Great Yarmouth. It is in woods and there are lots of places to go. Before we went, I looked on the internet and saw that people said:
“Fab place, caravan was clean. Plenty to do.”
“Swimming pool was great, much improved with the slides etc.”
“We visited Haven Wild Duck recently and we had a fantastic time. The park itself is beautiful and very well presented. The caravan itself was well presented but there was a few bits missed on the cleaning but nothing major and was easily corrected.”
A couple of people on the internet said it wasn’t very clean but when I went there our caravans were really clean. My mum would have been happy.
We didn’t use the pool as Ray said it was a little small and it was very busy and none of us like busy.
When we were there, we went to visit Sealife in Great Yarmouth. The cost is better if you buy online before you go and carers are free. On the first Sunday of every month, they have a quiet time from 10-11am.
We saw jelly fish, sting rays, tropical fish, sharks, penguins and crocodiles. We all really liked it and got to touch a starfish - it was bumpy.
Another day we went to Thrigby Hall Wildlife Gardens. The cost is better online and disabled people and carers get in cheaper. There were lots of animals to see – tigers, red pandas, different leopards, meerkats, different monkeys, otters, crocodiles, snakes and birds. You can walk in the trees with the gibbons and there is a special place to stand to be near the tigers.
We had a really good day and we were pleased to see they had made the paths good for wheelchairs.
You spoke – and we listened! PWS Sunflower lanyards now available!
Thanks to an amazing suggestion from the Owl Focus Group, we have joined with the team who created the Hidden Disabilities Sunflower and developed a lanyard and information card specifically for our PWS community!
The Owl Focus Group wanted the lanyard to show they have a disability and if a situation arises in public, it isn’t them but their PWS.
We listened to this suggestion and thought it was a great idea, which is why we have worked so quickly to produce the lanyards.
The lanyard and card are sold together and cost £5.95 including P&P. Get yours now at www.pwsa-uk.ecwid. com!
Happy birthday to everyone who will be celebrating between now and the next edition of Wise Owl Feathers! Let us know what you did to celebrate, and include some photos, and we will feature it in the next issue!
Quiz & Riddles
Promotional Merchandise
Quiz
Can you solve the following riddles?
1. Riddle: What has to be broken before you can use it?
2. Riddle: How many months of the year have 28 days?
3. Riddle: What question can you never answer yes to?
4. Riddle: What is always in front of you, but can’t be seen?
8. Riddle: What 5-letter word typed in all capital letters can be read the same upside down?
9. Riddle: David's father has three sons: Snap, Crackle, and _____?
10. Riddle: I am easy to lift, but hard to throw. What am I?
11. Riddle: Which fish is the most valuable?
5. Riddle. What can you break, even if you never pick it up or touch it?
6. Riddle: What goes up but never comes down?
12. Riddle: What has a neck but no head?
7. Riddle: A man who was outside in the rain without an umbrella or hat didn’t get a single hair on his head wet. Why?
13. Riddle: A cowboy rode into town on Friday. He stayed for three nights and rode out on Friday. How is this possible?
14. Riddle: If 2 is company and 3 is a crowd, what are 4 and 5?
WINNER! Congratulations to the winner of last issue’s quiz, Rachel Chan. A prize is on its way to you!
Send your answers to the riddles and your completed word search by 18th March 2024 to:
PWSA UK c/o Metcalf’s Commercial Decorators, 3 Deer Park Road, Moulton Park, Northampton, NN3 6RX
Name:
Address: Please make sure you put the correct postage on your envelopes, including checking that your stamps have barcodes!
Overcome the challenges of Prader-Willi syndrome.