Anna Kennedy Online – Autism Awareness Charity
Our guest on “All things Autism” Radio was Aston Avery

Our guest on “All things Autism” Radio was Aston Avery

Our guest on “All things Autism” Radio was Aston Avery

Anna Kennedy’s guest on ‘All things Autism’ was Aston Avery, please click here to listen to these amazing shows!

About Aston Martin Avery

Diagnosed with autism at two and a half, his family were told there was a strong possibility that he would be taken into residential care for his adverse behaviours. It was also suggested that Aston would be a selective mute.

His behaviour was so extreme that the family were confined to the house. At four and a half Aston underwent the first of numerous operations for bowel problems and was schooled for long periods of time at Guys Hospital in London. He was later diagnosed with a condition called entero-colitis a form of Crohn’s disease. Aston suffered with another condition called pica which meant he would eat and digest inedible objects.

At age ten Aston underwent an ace stoma procedure. The procedure meant his appendix were removed and a passage formed from his tummy through to his bowel, this would allow a tube to feed through to his bowel to inject stimulants.

Aston was to suffer further problems, the first stimulant sent Aston into anaphylaxis shock, and he became extremely poorly. The doctors decided to attempt other medications, but unfortunately, he had the same extreme reaction. Aston was to be diagnosed with Anaphylaxis to many medications. This meant that the tube was inserted through his tummy into the bowel every 48 hours and connected to a saline bag.

Due to the severity of the anaphylaxis Aston must always carry an epi-pen. A slight infection will require a hospital visit to find medication that will not affect his health. At eleven and a half Aston had to undergo a full colostomy bag for his bowel disease.

Aston has despite all this managed to achieve ISTD grades in Dance and Drama. He loves to sing; he is what you would call an all-round entertainer! Aston went on to pass his level one in sign language and to enrol with support on a mainstream performing arts course where he passed his B-Tec first at a merit and a pass in a National Diploma for performing arts.

Aston won the 2012 Pride of Essex award for overcoming adversity and from there has begun to blossom as a disc jockey. He has assisted in DJ roles for numerous charity events raising in excess of £80,000.00.

He will tell you himself he has been so fortunate to meet such lovely people along his journey. He volunteers daily for a local radio station where he now has his own daily radio show.

He was lucky enough to be awarded the Princess Diana award in 2015 for his volunteering which has shown just how far he has come. Going onto win The National Diversity award for Positive Role Model with a disability in 2016.

Since his performance at Autisms Got Talent in 2015 his life has taken a dramatic turn for the better, he has grown in both self-esteem and in confidence.

He was granted a scholarship through AKO and pineapple to attend a yearlong course at Pineapple performing arts.

The scholarship and local dance school La Danse Fantastique has seen a once very unassuming and obvious autistic young man blossom.

The change in Aston has been overwhelming; he is much happier and so accepting of his autism.

The honour of becoming an ambassador for a charity so close to his heart is by far up there with his greatest achievements. Aston has also with the help of his parents formed Teamaveryessex where he uses his fundraising skills to gift back to the local community.

He assists other charities in raising funds and with Astons pamper project to date they have gifted pamper packages to more than fifty local heroes. He takes a short film not groups and schools called This Is Me, helping to raise autism acceptance. Somehow, he still finds the time to keep active and dances 6 days per week.

His connection with AKO and the team means he can say “My name is Aston Avery; I AM AUTISTIC & I AM PROUD”!!

Aston’s social links:

Links for Team Avery Essex:

Richard Steven’s 365 Mile Walk for Anna Kennedy Online

Richard Steven’s 365 Mile Walk for Anna Kennedy Online

 

From Richard's Gofundme:

“Hi Everyone,

This year’s walk for autism will take exactly that. One Year! I will be walking once every month the amount of miles that the corresponding month (i.e. January 31 days = 31 miles) so we will be keeping with the endurance walking theme from the previous ‘Walk for Autism’s we have done from Inside the Orange.

We will be fundraising again for the Autism charity, Anna Kennedy Online, and we would love your support in this.

We will try and run additional opportunities alongside this to raise as much as we can. We managed an incredible £2500 last year, so let’s see what 2023 can do.

Thanks as ever for the support.
Rich”

You can find updates and donate to Richard’s Gofundme page here

Trudy Jacqui – A mama bear will stand between her child and an entire army

Trudy Jacqui – A mama bear will stand between her child and an entire army

I first met Anna way back in 1985. We were both office workers for a company based in Uxbridge.  She was a quiet, unassuming young lady with a beautiful spirit, who walked like a dancer listening to a funky tune and dressed as if all her clothes were tailormade.  We spent most lunchtimes together, had a shared love for dancing (though I was never in her league) and a passion for fitted clothing especially skin-tight jeans; but our friendship was deeper than the usual office friendship. She had a high energetic spark about her incredibly petite form, despite the quiet demeanour and taught exercise classes in the evening. But neither of us could foresee how much that high energetic spark would stand her in good stead in the ensuing years. A slow smile and a happy, infectious laugh, along with a great sense of humour paired with kindness was the perfect antidote for my rather serious stance on life!

I was thrilled when Anna told me that she was pregnant with her first child. It was a concerning time as she suffered from eclampsia and toxaemia, but she took it in her stride; determined to do her best for her baby. It was an honour to be asked to be Patrick’s godmother, who made his entrance into the world eleven weeks early in January 1990!  Weighing in at just two pounds, he was the tiniest and cutest baby I had ever seen, and I was absolutely terrified holding him!  I was in awe of Anna, who was a fantastic new mother, settling into her role quickly – seemingly knowing instinctively what to do with her tiny offspring.  We fell back into our lunchtime chats when she returned to work, understandably fretting about Patrick being under the care of childminders and in one case – quite rightly so!  I had the absolute pleasure of meeting Anna’s family when she had a more formal wedding in Middlesborough and later for Patrick’s christening.  Anna looked stunning of course in her figure-hugging bespoke wedding gown, made by her mum Mrs Sammarone.  Her mum was everything Anna said she was, and exuded the same warmth that Anna had! A few years later, Mrs Sammarone made my own beautiful wedding gown and bridesmaids’ dresses and to this day, she retains a special place in my heart.

I married a military officer and was becoming acquainted with moving around every few years.  My own prolonged battle with endometriosis, endless operations and fertility issues locked me into a silent world of pain, despair, and isolation – even from Anna, as I felt that my struggles were minor in comparison to what her and Sean were going through. A few years after Patrick was born, Angelo their second son was came along and later Anna and Sean were told that their second child had an autistic condition and the first! 

“A mama bear will stand between her child and an entire army, fighting with every breath, every ounce of energy she has within her to make sure they are safe!” by Kayla Runkell.

my heart broke for my friend at what that meant, but Anna remained resolute in exploring the best help for her sons. Patrick could not get into a school in their locality and the impact it had on her was heart-breaking to hear. No family should be treated like that in this modern age!  Feeling totally useless, I could only listen as I heard the torment in my friend’s voice as she would list the battles they had with the LEA and the challenges faced as a family. But Anna coped in her own way with such challenges. I was stunned when Anna said that they were going to remortgage their house to open a school for children with autistic conditions.  Anna was now a mama bear determined to fight for an equal opportunity for her sons!

Over the years, Anna and I kept in touch albeit irregularly and Facebook became an easy way of keeping in touch with her and following her journey. My husband and I had the privilege of attending the incredible opening of her first school for children with autistic conditions.  I had no doubt that the school would be a success knowing my friend, but I was unprepared for the depth and strength of her passion plus vision in providing children with autistic conditions with a good education, a chance to shine, to be happy, safe and have a sense of belonging. Anna and Sean went onto successfully help other families in similar positions. In all this busyness, despite existing with very little sleep, she manages to summon up energy and drive to literally bounce from project to project – I have no idea how she manages!  Of course, exercise and dance has always been her go to stressbuster and I am always sent into fits of giggles when I see her videos still wriggling those hips! I was so excited and happy to see Anna on Strictly Come Dancing strutting her stuff, it was good to see her inadvertently doing something for herself!

I got into teaching rather late in life and because of Anna’s story and being Patrick’s godmother, the impact of my friend’s struggles had a profound impact on me. Each child with autistic conditions under my care reminded me of Anna and Sean’s struggles and how the parents were coping. I was keenly aware beyond my teaching training of the extra need to help children with autistic conditions in mainstream schools achieve, feel safe, and valued. This meant not just ensuring that my lessons were fully differentiated for such pupils in my class, but in creating the right environment, making sure that the pupils and their parents knew that I was there for them, as well as giving the pupils the opportunity to become confident in as many areas as possible.  It is important for me that when in my care, a child shouldn’t experience what Patrick went through during his childhood.  It has been brilliant to see how Anna has helped Patrick achieve in life, culminating in working and living independently; job well done my friend!

The great playwright Tennessee Williams declared: “Time doesn’t take away from friendship, nor does separation.” 

For the first time in thirty years, my husband was posted locally to Anna, and we had a wonderful catch-up in 2022 before my final move up North. All those years of not being able to meet had not estranged our friendship.  It seemed as if we were simply catching up after only a few months apart!  We laughed and giggled as we looked back at our younger selves, the things we did and our life journeys. I gazed at my friend sat across the table from me with pride, at her journey, her strength, drive and passion for her children and was grateful that she had been given that strong resolve which also helps many parents of children with autistic conditions.  

Despite her challenges, achievements and accolades, Anna is still the warm, lovely friend with the beautiful spirit that I had met all those years ago – just more dynamic! I just wish she could get more sleep!

 

Autism’s Got Talent 2023 – Daisy Chain

Autism’s Got Talent 2023 – Daisy Chain

from daisy daisychainproject.co.uk/autisms-got-talent/

Autism’s Got Talent

Saturday 20th May 2023

 

 

 

What is it?

Autism charity Anna Kennedy Online hosts Autism’s Got Talent every year in London, and has done for the last 12 years. In 2023 it will be bringing its Autism’s Got Talent Roadshow to the North East for the third time, in association with Daisy Chain.

The performance will be held at The Globe in Stockton on the Saturday 20th May 2023. All acts will have a diagnosis of autism and perform any skill or talent they’d like to.

There is no winner, everyone gets a certificate. The event is an opportunity to shine a light on autistic individuals’ talents.

What is a talent?

Talent means (someone who has) a natural ability to be good at something

Your talent could be anything at all, from comedy, magic and beatboxing to poetry reading and singing. Any and all talents are welcome. You will have a chance to showcase your talent in your application form and audition recording.

Who can apply?

Applications are open to anyone who has a autism diagnosis and is over 5 years old. Anyone under the age of 18 will need consent from an authorised adult. If your application is successful you will perform on stage at The Globe in Stockton, you’ll need to be comfortable doing this.

How do I apply?

An application form will need to completed, and sent alongside a recorded audition tape to agtapplications@daisychainproject.co.uk.Applications close at 4pm on Wednesday 22nd February 2023.

Application forms can be downloaded by clicking here.

Final shortlisting will be complete by Friday 10th March 2023. Due to the volume of applications, we won’t be able to reply to everyone. If you’ve been successful you’ll have heard back by Friday 10th March 2023.

Can I buy tickets?

Yes. Tickets will be available to purchase in early February. The link will be added here and promoted via our digital channels once tickets are available.

Terms and Conditions

  • Anyone who auditions must also be available for the show on 20th May 2023.
  • All applicants under 18 must have consent from an authorised adult.
  • All performers must have a diagnosis of autism.
  • The event is aimed at all audiences, including family, therefore we ask that performances are suitable for all ages.
  • Acts must be 5 minutes or under.

If you have any questions prior to submitting an application, please email agtapplications@daisychainproject.co.uk

Just Breathe – Giuliana’s 2 Easy Tips to Lower Heart Rate, Blood Pressure and Avoid Meltdown

Just Breathe – Giuliana’s 2 Easy Tips to Lower Heart Rate, Blood Pressure and Avoid Meltdown

We all hit points in our lives at times where it all just gets too much. This applies to us as parents of children with additional/special needs as well as our children themselves.

Stress and fatigue amongst SEN parents is 4x higher than in the military & we are also suffering with PTSD or secondary PTSD at equivalent levels to a combat veteran. These easy breathing techniques are discreet & fast acting, lowering your heart rate & blood pressure as well as reducing stress, anxiety & overwhelm.

Using deep breathing techniques helps you to control your emotions, to self regulate, as well as boosting attention, focus & learning ; giving us that all-important perspective as our bodies are taken out of flight or fight. Deep, mindful breathing also helps you to remain calm ; essential for those of us in the “front line” whether it’s personally, professionally, or both. Appropriate social behaviours are then stimulated as well as happiness.

Have a great week everyone. It is a tough world out there at the moment so please remember to take those deep breaths when you need to.

 

Stella Waterhouse – Founder of  Koloko – accessible travel for sensory travellers

Stella Waterhouse – Founder of Koloko – accessible travel for sensory travellers

Born in Warwickshire, I spent my first few years in Olton (outside Solihull). I remember
standing in a corridor with other “slow” learners as we struggled to read, although once I had
mastered that skill I read voraciously. I also suffered from terrible migraines and found some
music painful. My widowed mother remarried when I was eight, and we moved to a beautiful area of
Gloucestershire. While I enjoyed English and history I wasn’t so keen on other topics and when
I was offered a job working with staff children in a local Camphill school (which catered for
children with a range of learning disabilities) I jumped at it.
I met three intriguing children there, all of whom were totally different but shared the same
diagnosis. I went on to spend much of my career working as a teacher and caregiver before
becoming Deputy Principal of a residential community for autistic adults. It was there that I
realized how extremely anxious most of the residents were and so I began to write a leaflet about
the link between autism and anxiety.

 

 

 

Looking for the causes of that anxiety led me to investigate the sensory differences that are
commonplace in the world of neurodiversity, although the effects vary from mild to severe.
That was when my early experiences started to make sense. My hearing differences (though
mild) became clear when I read Sound of a Miracle by Annabel Stehli, and I corrected them using
the auditory programme her daughter had used with great success.
Meeting the late Donna Williams was a great help, as she was always willing to answer my
questions and taught me a great deal. Intriguingly, while her visual differences were very severe
they were alleviated by tinted lenses, so I tried them myself and found my migraines stopped.

I now live in a lovely and thriving village in West Dorset and am not too far from the Jurassic
coast. In my spare time, I enjoy walking my dogs, browsing in antique/junk shops and the
company of friends. I gave up watching the news during Covid as it was too depressing.
Nowadays I try to focus on the positive and tend to watch films/read books that have a feel-
good factor or make me laugh.
Books.

My books include a series of concise informative books for parents, plus longer books
which I’m expanding into a series called “Autism Decoded.” The first book “The Cracks in the
Code” is on Amazon and the 2 nd book “The Ciphers”, will be out later this year. My home site is
www.autismdecoded.com and offers a wide range of information + free resources.
Koloko Direct.

I spent much of lockdown developing a sensory-friendly holiday directory. A
FREE-to-use site that features holidays worldwide and includes a whole range of different places
from hotels to lodges to caravans + beaches, amusement parks, autism certified venues – and
much more. It enables you to book your holiday directly with the venue of your choice while
also offering you the option to contact one of our associates for a tailor-made holiday specifically
designed to suit your family’s needs. See www.kolokodirect.com for more information – or
Facebook.
Help needed.

Please use Koloko and share it with anyone who might find it useful. That will
help us continue to develop and add more holidays – and also to develop a Shop to support it.
It is a Community Interest Company so the profits will help us develop other sensory friendly
projects.

Kaiko Fidgets – Check out these quiet and discreet fidgets – https://kaikofidgets.com – Now on Ebay.co.uk

Anna