Autism Hero Awards 2019 – highlights

Autism Hero Awards 2019 – highlights

Anna Kennedy Online presents the Autism Hero Awards 2019 Highlights

Created by our incredible Charity Patron – Russell Wiggins

Anna’s guest on Women’s Radio – Rebecca Taylor

Anna’s guest on Women’s Radio – Rebecca Taylor

​Rebecca Taylor is Anna Kennedy’s guest this week on ‘All things Autism’ on Womens Radio Station.

Rebecca Taylor shared the following:

My name is Rebecca Taylor (learningrose.co.uk)

I was born in Preston, Lancashire and had a great childhood.  My dream from the age of 7 was always to become an air hostess. 

School was not the best experience in the world, and despite getting through the exams, I eventually achieved my goal at the grand age of 30 and started to work for British Airways.  To say it was a great experience doesn’t give it the credit it deserves.

You work hard – but you play even harder. During this time, I got married and divorced and this was hard on Josh to understand. 

Luckily, my ex-husband and I are still friends and he sees Josh when he can and I taught Josh that time with his dad is special and just for him.

Nearly 8 flying years later  I had my son and decided to leave the airline as I didn’t have a huge support network to help me look after him.

His early life was great and at 17 months, I noticed that something “wasn’t quite right”. With the initial help of my sons nursery, we started to look at the possibility of him having additional needs.

After many meetings, tests, chats, research etc, I was informed on the day after his 3rd birthday that Josh had autism!  That was the day my life, and my sons life changed dramatically.

At first I cried, because I felt that I had disappointed him greatly.  I then started to get myself sorted out and decided that no matter what else was heading my direction, Josh was going to succeed.

That’s when the battles started with the local authorities to try and get him a statement of education (now EHCP) because I have always believed that EVERY child is entitled and deserves a first class education.

​At the time in Preston, there didn’t seem to be much help or support for families of children with autism – so I decided that I was going to make a change for the better and started my own parent carer support group called JAG (Junior Autism Group).

On the first meeting, I had over 75 children attend with their parent or carers at a local play centre where it was prejudice free –  it continued to flourish at each of the monthly meetings.

I asked ‘professionals” to come in and speak to the parents and carers about a plethora of subjects.

It was at this time I decided to move to Cheshire to find better education for my son. 

It was challenging as we moved house 3 times in seven months because the local authority would not even consider Josh until we had a permanent address.

After 8 months of battling with the local authority, I finally got him into the most magnificent autism specific school run by the Together Trust and not only is my son very happy – I have my loving son back too.

That’s when I started  Learningrose which is called that name because I’d like people to learn about autism and I come for the red rose county –  hence Learningrose.

I started to write my airport journey cards and it was a lot of work, but I knew from first hand experience of working on the airlines, that there was little to nothing available for adults and children with autism and other disabilities, to access the amazing world of air travel.

I eventually had my work approved by the National Autistic Society and my work now proudly holds the autism logo of working in partnership with the NAS.

Last year I was approached by British Airways purely by chance to see if I could produce something to help their passengers access their flights.What then happened was the final production of my 7 “Airport journey cards” which are now available from British Airways, my website www.learningrose.co.uk and it’s now an app that can be found on the app store under “Learningrose”.

To be able to see my initial idea in a digital format is exciting and I owe a huge thanks to my business partner Craig from HardyFinch in Lancashire for helping my dream come true.I firmly believe that just because someone has a diagnosis – it shouldn’t stop them from exploring this amazing planet.

2020 will be an exciting year, as lots more information and lifestyle cards shall be available on the app including visiting the doctors, dentist, supermarket, stranger danger and going on a cruise, to name but a few.

Rebecca’s interview will be played for the rest of the Christmas show week at 1pm and 1am at www.womensradiostation.com

Another smash hit Relaxed Performance for the Towngate Theatre

Another smash hit Relaxed Performance for the Towngate Theatre

Anna Kennedy OBE and one of her charity Ambassadors Aston Avery were pleased to support and attend once again this year’s Charity relaxed performance of Dick Whittington. 

The Towngate Theatre Basildon once again opened its doors for a very special performance of the pantomime, which is for the sole purpose of welcoming those who would not usually be able to join in the festivities of a panto.

A relaxed performance of the pantomime, consisted of a calmer setting for the performance and the Theatre to suit the occasion.

The theatre announcements were minimal to none, the house lights were up at around fifty percent and many of the bumps and jumps throughout the performance were edited so that the performance was accessible to all.

Before the show started some of the cast came on stage to talk through the story-line and explain some of the scenes, costumes and props that would be used in the show.

The theatre once again invited charities one of which was Anna Kennedy Online Autism Charity who are dedicated to supporting various causes from all across Essex who attended the theatre.

Anna Kennedy OBE and her charity champion couple Dawn and Keith Avery shared:

There was such lovely atmosphere at the theatre lots of laughter and families attending enjoyed the experience without being judged.

We were pleased to see so many families attend and it was a joy to hear children laugh, giggle at the pantomime characters.

Many of the children sang and stood up and danced to the music.”

Anna Kennedy OBE and Aston Avery were both invited behind stage to meet some of the cast to talk about this years relaxed performance. They both congratulated the cast for once again creating special memories for many of the audiences families.

Both Anna and Aston also talk about ‘All things Autism in Essex ‘ every first Thursday of the month on Gateway Radio 97.8. Basildon is well on it’s way in becoming an Autism friendly and inclusive town.

A lesson from my autistic brother’s severe neglect

A lesson from my autistic brother’s severe neglect

Around three weeks ago, a story I couldn’t articulate because it was too painful was shared on Sky News. I felt relief that it was no longer my parents and I who had to carry this by ourselves. Sharing our life during 2017 and 2018 was important, not only for us to process what happened, but to ensure that no other family must endure the storm we had to in the future. Autism awareness is not just an awareness on what autism is, but also the unsettling treatment of some autistic people.

I have an autistic older brother with severe learning disabilities. He is a funny, innocent, and a kind soul. Sagar enjoys swimming, nature walks, and loves music – his MP3 player is his most important possession!

For 11 years, since he was 16, my brother lived in a residential home in the tranquil countryside. He had regular home visits. He had a routine. He autism was understood, and most importantly, it was accepted.

Sagar has limited verbal speech, he can communicate if he is hungry or what song he wants to listen, but when he broke his arm, he couldn’t communicate the pain. He loves making people laugh by making “funny faces”, and he loves learning new people’s names.

For 27 years of his life since birth, Sagar never had challenging behaviour to cause concern – he was never destined to be trapped in a mental health unit. However, no autistic person should be, no matter their behaviour. It is not an environment which is autism friendly, it is quite the opposite – and this is a fundamental part of the fight for justice and system change.

He had always been a happy, settled young man. However, a storm hit us, and it hit us hard.  I was only 19 when my brother’s life changed, and I lost out on my youth because of the imperative family input that needed to be provided to save him from a failing system.

My brother was moved from this residential home he was at for 11 years and moved by Hillingdon to live in Hillingdon in a studio flat without night staff.  

The social worker, transition manager, registered manager, and the psychiatrist involved were aware that my brother’s health (mentally and physically) was rapidly declining on a day by day basis for 8 months that he was at this flat.

It is a supported living flat, and he was placed on the first floor which is not even regulated by the CQC.

We expressed that Sagar requires night staff because not only is it a documented requirement, but also that he cannot cognitively understand how to ask for help if it is needed at night as anything could happen.

Sagar could not cope, alongside several medication change from a psychiatrist who did not have his medical history records, did any tests on him, and had limited understanding of his autism, it made Sagar become even more distressed.

He would chew live wires alone at night, not sleep throughout the whole night, self-harm and his life was in danger whilst being alone at night throughout a lot of the danger. As a result, the flat he lived in became too dangerous, and with no other placement readily available, my brother was trapped in a Mental Health Unit for over one year.

Ironically, he is back in the countryside and on the same medication he was on prior to all of this starting, meaning this whole incident led to a 360 point where we landed exactly where we were around 3 years ago, but my sweet brother is just traumatised beyond measure.

Some parts of the gruelling neglect were covered on Sky News titled “Autistic Man’s ‘cry for help’ living in blood and faeces stained flat”, and it gives an insight to the 20 months my parents and I, but most importantly Sagar, lived through. Click here to read details.

I would like to take this opportunity on Anna Kennedy’s wonderful charity website to highlight the importance of autism understanding from my first-hand experience from the scandal my brother went through.

The fight is not only limited to getting justice for my brother and accountability for the staff members actively involved in this neglect. It is also about the unjust broken system designed for autistic people.

There needs to be a culture shift in staff ego, family’s input needs to be considered as paramount importance and an autistic person should be considered individually, not collectively as a statistic from the council’s perception.

Currently, there are thousands of autistic people locked in a Mental Health Unit. Statistics show hundreds of admissions could have been avoided, and hundreds are ready for discharge. We need to do better as society living in the 21st century.  This can only happen through continuing the fight for autism awareness and acceptance.

As a result of my brother’s medical neglect, the NHS has stated they would ensure that all psychiatrists check medical history records prior to changing or altering a patient’s medication. As a result of my brother’s council neglect, the Ombudsman stated that Hillingdon Council needs to review their policy on autistic residents and ensure that their needs are met.

However, this is not a win, not just yet.  History has shown that the NHS, Hillingdon Council and several other councils have been involved in scandals before – there needs to be more than promises. I hope in 2020 we continue to see the rise of autism awareness and acceptance, and the unfolding of unsettling stories which are not lost in the media or kept hidden, because autistic people deserve much better than what they have been offered so far.

Anna’s guest on Women’s Radio – Dave Bedford Auty@40 Words

Anna’s guest on Women’s Radio – Dave Bedford Auty@40 Words

​Dave Bedford is Anna Kennedy’s guest this week on ‘All things Autism’ on Womens Radio Station.

Dave shared the following:

My name is Dave (aka Auty@40).

I was born and bred in Lancashire. I’m not going to say I had a normal upbringing, but instead will say it was typical of that area, and the era. I was born Hard of Hearing, and went for hearing tests until I was fifteen where my Mum finally asked if there was anything that could be done.

We were told that all that was available at the time were analogue hearing aids that would amplify everything by the same level. All this would result in would be the low frequencies I currently can hear drowning out the high frequencies I struggle to hear.

They advised to perhaps come back in ten, maybe fifteen years, when maybe they would have made some advances in digital technology. I always struggled socially, and just put this down to the fact I was hard of hearing.

Though there were always certain people I had no problem interacting with, but others I always seemed to struggle with. I just told myself that I got on with other northerners, because we must have an unwritten understanding of the world and common vocabulary.

Fast forward to when I was approaching 30, and I was told I could get digital hearing aids.

As part of the process, I underwent genetics testing to try to determine the gene that was at fault for my particular hearing loss.

This was with a view to try to determine the likelihood of me passing it to my children, and reduce it if possible.

The gene could not be found, and so it was a fifty-fifty chance of me throwing my faulty gene in the pot, or my wife throwing her working gene into the mix when it came to having children.

My daughter arrived, so she went for hearing tests and sailed through.

Perfect hearing.

When my son arrived, he went for the same tests, but he would not cooperate as was expected. The hearing tests consisted of two blackened glass cabinets with toys in them. The audiologists would distract the child with a toy and then a certain frequency sound would be played from the left or the right. If they turned their head in the direction of the source of the sound, left or right, the blackened glass would become see through in the corresponding cabinet, and a toy would dance to reward them.

My son would stay focused on the initial toy, and wasn’t interested in the potential toy on reward were he to acknowledge the sounds. They thought his hearing was ok, but could never say for certain. I couldn’t help him cheat, because I couldn’t hear the tones. So extended tests were required to test his ear drums and ear bones without the need for him to give visual signs that he had heard the frequencies.

He passed these, but we got referred to speech and language, and occupational therapy, and child psychologists. I couldn’t ascertain what they expected from him, but we finally were put forward for a diagnosis and it was confirmed that he was on the Autistic Spectrum.

Upon reading the documentation, I couldn’t understand the problem. Surely everyone would struggle with the examples given and would benefit from the suggestions they provided that should help? I certainly would struggle in the same manner.

Wait. What? Just me? Why’s that then?Oh…

And so I asked my doctor to be put forward for my own diagnosis and at the age of 40, received my own diagnosis of Asperger’s. I wanted to help others in some way, and try to bridge the gap between the Neurotypical World and the Autistic World. I’d been masking, unknowingly, in the Neurotypical World for so long, I wanted to help Neurotypicals understand the challenges, and perhaps educate people enough so that the level of judging is reduced.

When a situation might be witnessed where upon first sight it may seem as though it is an unruly child and a parent with no authority, to perhaps consider, maybe that is not the case, and that there may be other factors at play.

And at the end of the day, is the scene really that much of a distraction that it warrants a frown or a scowl? How about trying a smile instead? I also wanted to document days and the areas I struggled with, but include example that have helped me cope, so that people in similar circumstances could identify and at the very least realise that they are not alone and maybe, just maybe, provide some nuggets of help within my ramblings.

And so Auty@40 (http://facebook.com/Autyat40) was born. I post there as regularly as I can and I hope people can use it to follow our (myself and my family) journey. Some days it may come across as me pin-balling through the obstacles that are presented to me. Other times, it may appear as though I have some influence over them. I hope you enjoy reading them as much as I take pleasure from writing them.

Dave’s interview will be played for the rest of the week at 1pm and 1 am. www.womensradiostation.com 

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Month: December 2019