Anna Kennedy’s guest on ‘All things Autism’ this week: Autism and Sleep – Dr Dagmara Dimitriou and Parent / Campaigner Leo Andrade

Anna Kennedy’s guest on ‘All things Autism’ this week: Autism and Sleep – Dr Dagmara Dimitriou and Parent / Campaigner Leo Andrade

Anna Kennedy OBE’s guest this week on her Womens Radio show  ‘All things Autism’ was Dr Dagmara Dimitriou and Parent / Campaigner Leo Andrade

Dr Dagmara 

Dr Dagmara Dimitriou is a director of the Lifespan Learning And Sleep Lab at the University College London. She has published over 50 articles on sleep and related issues across different developmental disorders. Her current work focuses on sleep related experiences by autistic individuals across lifespan.

Dagmara spoke about the current and past research with autistic adults and children. Research documents can be found on www.lilaslab.com/ UCL Institute of Education, London

Leo Andrade

Leo Andrade shared: ‘It was so lovely to go for the second time in two years to the Women’s Radio show with the fabulous warrior Anna Kennedy. My son Stephen diagnosed on the autism spectrum now in his 20’s was detained in two Assessment Treatment Units for 6 years. I pleased to share that Stephen is finally now living in his own home with support and is making progress. Stephen is making small steps however , I can see my Stephen coming back to me.

This time on the show Anna , Dr Dagmara and myself discussed sleep difficulties throughout the years experienced by our sons.When you talk about sleep we parents of autistic children know only to well what is like to experience sleep deprivation.

Our children do not sleep, therefore we don’t sleep.It’s exhausting , and when we  as parents don’t sleep it impacts on our day . Some of us do suffer depression and other parents experience mental health health problems.

Our children and young adults can also suffer with sleep deprivation and erratic sleep patterns. No two individuals are the same. It was very interesting hearing Dagmara’s research on sleep.I would like to thank Anna as always and I would like to share the link to the Human Rights case against the DSHC that we briefly spoke about and in the media this week. ‘

https://www.equalityhumanrights.com/en/our-work/news/health-secretary-faces-legal-challenge-failing-patients-learning-disabilities-and

If you missed this weeks ‘ All things Autism ‘ it is being aired again this weekend at 1pm and 1am. www.womensradiostation.com

Accessible website – our partnership with Recite Me

Accessible website – our partnership with Recite Me

Anna Kennedy’s mission is to support as many people as possible and this includes people visiting their website. To be able to support children and adult with autism and any other website visitors online Anna Kennedy wanted to make their website as accessible as possible. This includes people who may not speak English as their first Language. 

About Recite Me – Our Solution

Anna Kennedy added Recite Me’s accessibility solution on to their website to support all visitors to be able to read their autism charity news, support information and kindly donate barrier-free.

The Recite Me assistive toolbar allows everyone to customise the Anna Kennedy Online website and event websites in a way that works best for them to understand and read website content easily.

The accessibility toolbar provides everyone with a unique set of features including text to speech functionality, fully customisable styling options, reading aids and a translation tool with over 100 languages, including 35 text to speech voices and many other features.

Recite Me web accessibility and language toolbar

Recite Me is innovative cloud-based software that lets visitors to our website view and use it in the way that works best for them. We have added the Recite Me web accessibility and language toolbar to our website to make it accessible and inclusive for as many people as possible.

It helps the one in five people in the UK who have a disability, including those with common conditions like sight loss and dyslexia, to access this website in the way that suits them best.

It also meets the needs of the one in ten people in the UK who don’t speak English as their first language, by being able to translate our web content into over 100 different languages.

Anna said:

“Since we have been working with Recite and updated our website making it disability friendly, we have received many compliments and thanks from the autism community. Recite Me are a pleasure to work with and always respectful and understanding exactly what we are trying to achieve to make the website accessible to all”

Anna Kennedy OBE
Director Anna Kennedy Online

Further Information

Please read our Accessibility statement: https://www.annakennedyonline.com/accessibility-statement/ 

For further information on our case study – please click on this link: https://reciteme.com/case-study/anna-kennedy-online

I Am My Own Ambassador – written by Georgina Robertson

I Am My Own Ambassador – written by Georgina Robertson

I hope with this article to be able to create a positive view on disability and challenge and highlight some of the disability constructs that continue to create barriers for children of today as they have previously done for children and adults historically. I hope it will encourage parents, professionals and others to ask the children themselves and not only hear but listen to what they have to say.

They are so often a forgotten group who are not heard simply because of the label child, their perceived functionality or other labels such as Autism, PDA, ADHD etc.

Today I would like to celebrate my son who has taught me so much, especially over the last fifteen months. He has shown me that I as a parent, need to continually be introspective as I continue to navigate the highs and lows of parenting without the aid of a manual!

I am fortunate, he is able to articulate in his own way his views around his invisible disabilities, the prejudice he himself has experienced historically and currently; the isolation within his own community, within the activities he enjoys and the effects of these on him, but also his own solutions to enable himself to overcome these.

I am often criticised by professionals for discussing with my son his disabilities my disabilities and those of others but listening to my son’s views, his ideas and his solutions, enables me to help him.  He is my best guide to inform me of what he needs.

He is his own best ambassador. It has also helped him view others through a lens of understanding with more maturity than would be expected for a child of his age.

An example of this being when we recently attended his dance studio where he was doing his usual favourite sensory seeking behaviour which helps him to self-regulate; a headstand on the seat which he tells me “gives him comfort and helps with stress because it feels like he is being cuddled.”

I was sitting next to him reading a book on Disability studies by Dan Goodeley for my PgCert in Autism and Asperger’s when he asked me what I was reading. It was a section on the Foucauldian Principles of Biopower and Impairment; this sparked his interest so I read the following to him thinking oh he will not understand it or be interested. HOW WRONG I WAS!

Impairment is an element of diabolism because impairment is discursively constructed in ways that deny access to the normal life of the community” 

Disability is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers”

Foucauldian Concept of BioPower techniques discourses of the self that people have come to know and constrain themselves by.”

“We come to know others and ourselves through the discourses of biopolitics”

He asked me to explain so I simplified it and a discussion took place around how others may limit us by their views on what they think we can or cannot achieve and how we can limit ourselves; we also discussed how others may try to mold us so that we do what others view as acceptable, why that may happen and what that feels like.

My son gave some interesting personal views that I would like to share before going on to celebrate how he himself challenges the constructs, limitations, isolation others place upon him within his own community and how he is becoming his own personal ambassador also how he himself wants to create a Vlog so that other children can perhaps identify these within their own lives and hopefully realise that they too can achieve their dreams.

In relation to being molded he explained that “some are like soft playdoh that can be molded but he was like dry playdoh and the more you try to make it a different shape the more it will break and crumble. He was like a stone that would break because it was being hit by a hammer to make a different shape”

This comment triggered feelings of sadness because I remember how when he attended a Specialist provision that’s exactly what it was like, watching him crumble as they tried to make his behaviour socially acceptable to his local community, the same local community that continues to isolate him.

This resulted in school refusal and from that point things began to change and I often see and hear from other parents a very similar story. Over the last 15 months my son has accomplished so much. At first he attended climbing sessions and gymnastics only but over time you could see the difference, through picking and choosing his ow

n personal challenges, his confidence grew as he overcame each one. It didn’t stop others being unkind to him but he kept trying. He gave up when one trainer rigid in his approach which triggered strong anxiety.

Possibly the old adage of I have worked with children with disabilities for years so therefore ….. He didn’t listen to my son and what he needed nor what would help him.

I see this often where professionals who are used to working a certain way find a child challenging, a child who challenges their methodology, to be socially acceptable and if not punished and corrected.

The view often held seems to be that they require too much time, effort, patience and resources but the one size fits all methodology doesn’t work.  Children are their own best ambassadors if we just take the time to listen to them. 

However, some young lady coaches in his gymnastics club he attends have done the opposite. Lucy teaches him in a Home Education group and he thrives, she listens, recognises his struggles, encourages him, she is flexible and gentle but firm when needed. She has shown him she believes in him too.

Lucy recognises and acknowledges his passion and has taken the time to get to know him, something some coaches do not always get an opportunity to do or were unwilling to do. He has gone from proficiency badge 8 to one and recently achieved his Bronze and Silver in both Floor and Rebound and Silver in Apparatus all in just over a year.

.Recently he again showed his own insight into his own difficulties but also then problem solving not only for himself but others. He suggested to his coach that children may struggle with doing gymnastic badges so he suggested to his coach that maybe if the skills were done in class and marked off so the children didn’t know they were doing the badges that would be better. He also suggested maybe mixing the skill levels would also help to prevent boredom.

Purely validating those thoughts, views and ideas alone even if it is something that cannot be accommodated gives a child a voice, allows them to build confidence in expressing themselves and enables children to become their own ambassador. What I have also seen is that it gives children an opportunity to support each other through their own experiences.

Over the last few months my son has expressed a desire to compete in men’s artistic gymnastics but he struggled to voice this to others. Others view, though I may be wrong, was that they did not hear his voice because their view was it was mine, not his. I kept encouraging him and explaining to him the importance of expressing his hopes, dreams and aspirations as well as what is worrying him himself.

The system during various processes often states they want to hear the children’s views but when it doesn’t match their own perception or views they choose to then state that they had not sought them because of their chronological age or other factors.

I asked him to explain to me why he wanted to do gymnastics and what he loved about it and I was told the reason he wanted to compete was “he wanted others to know he had a place in gymnastics too” the reason he loved gymnastics was “feeling of flying, with feet off the ground “eventually though he was heard and a young coach named Emy has offered to support him on the pathway to competition.

So we have started this journey with a combination of one to one training, recreational gymnastics, tumbling; acrobatics and a personal progression pathway for him to help him achieve his goal of competing.  She has shown him she believes in him too and that she will support him to get there. Coaches like this need recognition and validation because they themselves are stepping outside disability constructs, they are seeing the child, their passion and their hopes and dreams.

Also noticed by myself and others is he naturally starts wanting to share with others the skills he has learnt to help them achieve the skill. When he struggles because of the perceived demands one way that’s been helpful to overcome this is to enable him to help others learn a skill. Which may be why he has told me and others he wants to be a gymnastics coach. Gymnastics has offered him so many opportunities to develop interpersonal skills, to be part of a community that shares his passion, to socialise and work through issues that may come up in the safety of a supportive environment. 

When he was younger my son tried dance lessons but unfortunately a lack of understanding, gossip and preconceived ideas of what Autism looks like meant that he was asked to leave the dance studios which really knocked his confidence and upset very much; this resulting in a refusal to do what he enjoyed most, dancing. However, we as a family have recently found a dance studio where he has again begun dancing, enjoying musical theatre and also cheer-leading.

I marveled at how far he has come over the last year when he recently expressed his eagerness to take part in a show, which he continues to prepare for on the 29th of March. Another opportunity to have fun, to personally challenge himself, to increase self-esteem and challenge the views others hold about his dis…abilities. A perfect learning opportunity for everyone.

What is sad is on this journey with him is that I have come across and continue to come across the difficulties well documented in disability studies. Of the destructive, negative constructs that dis-empower not only children but also adults with disabilities. The lack of opportunities, lack of facilities, training, funding, support networks. How perceptions of disability impact upon not only children with disabilities but their parents.

For Instance, recently the views, opinions, assumptions of professionals within the local authority expressed to myself and others that a child attending activities that are not for disabilities only equates to the documented needs are embellished/exaggerated in some way and do not require support.

That only education and socialisation in a formal school setting is the only acceptable option for children like my son, that attending groups of the child’s own choosing is forced Isolation. The rigidity of services in regards to what constitutes an appropriate, efficient and suitable education, socialisation and appropriate peers yet they place no value on the views of the child and when in receipt of them they are not shared or it could be viewed as withheld. 

On one occasion when I showed a professional my sons certificates of achievements over the last 15 months the response was “anyone can print certificates off the internet” thereby deliberately dismissing and minimising my child’s accomplishments. In reality, children’s development is not static but fluid, can take place in a variety of settings and many factors can and do contribute to that.

There is immense scope and fluidity in children’s personal growth and development which is specific to that child because every child is different, no two children are the same.

More than once I have seen others lack the confidence in him and struggled to believe in him because of their perceptions of myself the parent, the perceived behaviours of my family, our disabilities and possibly the energy, time and effort required to work with a child who hides his personal difficulties through masking; who does not fit into the stereotypical model of disability created by society; a child who challenges their constructs around that young person.

My son is his own best ambassador, he enables me to help him by being able to express himself, through various mediums, over the last 15 months he has begun to read, obtained certificates in RHS Gardening, Crest Awards, Gymnastics, and is now getting ready to participate in a show with his peers from his dance studios.

He hopes to compete in disability men’s artistic gymnastics within 6 months. Wants to create his own Vlog to help others to know they can achieve their dreams. This is a young boy who 15 months ago was too scared to attend school, was expressing his anxiety and demand avoidance in lots of ways that were not helpful to himself or others. He has set his own challenges and succeeded; it’s been a roller coaster but a journey that is not easily forgettable.

He has taught me more than any text book, or professional I have ever known. He has shown me how a child can flourish when others take the time to listen and actually hear in order to support. He has shown me his own personal insight and understanding into his own struggles and how he then uses this to help others. 

Yes, he has his challenges, yes he struggles but his own understanding of his own disabilities has given him the knowledge and understanding to be his own ambassador, to say what does and does not work for him. I am so proud of him.

Disability constructs are destructive, every child is unique, every child has potential, every child deserves an opportunity to achieve their dreams and aspirations. It is morally wrong for others in positions of authority to determine who they view as worthy of support, who will give back in the future, who deserves support via their depleted budgets, because in the right environment with the right support, patience, time and effort children can and do flourish. EVERY CHILD MATTERS.

Anna Kennedy’s guest on ‘All things Autism’ this week: Gergana founder of London Music Box

Anna Kennedy’s guest on ‘All things Autism’ this week: Gergana founder of London Music Box

Anna Kennedy’s guest this week on ‘All things Autism’ on Womens Radio Station was Gergana founder of London Music Box

My name is Gergana and I am the Founder of London Music Box – an award-winning music tuition school for mainstream students on those on the Autism Spectrum, learning in one inclusive and supporting environment.

My aims with London Music Box are to bring together mainstream students and people on the Autism Spectrum without labelling and division, as well as to smash the stigma and dispel the myth that ASD students are not as normal as “normal” people are.

Our mission is to educate society that people should not be dismissed solely because they are on the Autism Spectrum.

1. Tell us about yourself?

I am originally from Bulgaria. I’ve graduated from the National Music School there with Piano Performance and received a full scholarship at the University of Denver to do my bachelor’s degree. They’ve also awarded me with a full scholarship to stay and do my master’s degree there in Piano Performance and Music Education.

I’ve moved to England after I was accepted in Cambridge to do a Doctorate degree. Instead of that, I’ve decided to start London Music Box.

We are based in London and have been running since 2013.

2. Why was London Music Box set up?

A mother of an ASD child got in touch with me asking whether I would be willing to teach her son, as she couldn’t find someone that was accepting of him and wanted to teach him. After a bit of research, I found out that there wasn’t a school or a service like this where they will openly accept (and be proud of it) ASD students. I realised that I can change this as I believe everyone has the right to play and make music.

I’ve started London Music Box as I wanted to expose more mainstream students to ASD students so they can learn in one inclusive and supportive environment and teach society that people shouldn’t be dismissed solely because they are on the ASD spectrum.

Our aims with London Music Box are to bring together mainstream students and people on the Autism Spectrum without labelling and division, as well as to smash the stigma and dispel the myth that ASD students are not as normal as “normal” people are.

3.What services do you offer? 

We offer 1:1 music tuition for mainstream and ASD students in all instruments including voice. The lessons are held either in one of our central London studios or as home visits. We found that the most popular instruments are piano, guitar, violin and voice and try to concentrate on them. Along with regular music tuition, we also prepare students for ABRSM exams.

4. What differentiates you from other music schools?

We are very proud of our work with ASD students, as well as our events and socials throughout the year. We have several themed concerts each year which are accompanied by socials afterwards. For example: our Christmas concert was so much fun and we went to a pizza-making workshop afterwards with all the kids.

5. What difference have you seen in your students since joining London Music Box?

Because of our frequent performance opportunities, you see the students grow in confidence, as well as musicians.

The fun and social aspect of things is of course there, so they make new friends along the way and obviously the benefit of doing music- we all know how beneficial it is not only for ASD but also for mainstream students.

6. What do you think mainstream students need to know about ASD students?

I want society to understand that difference between mainstream and ASD students and why ASD people are the way they are, behave and do the things they do….and not to feel uneasy about them when they are around.

7. How can parents embrace the use of music with their autistic children?

We all know the positive effects of music, which is particularly helpful for ASD students, as it is often a way of expression, an outlet for them especially if they are non-verbal. It is important to expose kids to different types of music each day- whether is having something on the background at mealtime or taking them to a show. There are lots of music games you can do at home- from ‘’musical statues’’, ‘’musical chairs’’ to clapping and tapping games which a variety of rhythms.

8. What is your long-term goal for London Music Box?

I would love to see London Music Box reach more people through music, not only in London but in other cities in England, and why not other countries. Our goals will still be to spread awareness about autism and get as many ASD people to try music and explore their own full potential.

Connect with London Music Box on social media

Facebook: www.facebook.com/LondonMusicBox

Twitter: @londonmusicbox

Instragram: @londonmusicbox

Website: www.londonmusicbox.com

Email: londonmusicbox@gmail.com

If you missed Anna Kennedy OBE’s interview this week on Women’s Radio Station with Gergana it will be aired again this weekend at 1pm and 1am. www.womensradiostation.com

We Invite You to Join Us in Celebrating and Embracing Neurodiverse Strengths

We Invite You to Join Us in Celebrating and Embracing Neurodiverse Strengths

We Invite You to Join Us in Celebrating and Embracing Neurodiverse Strengths

 

About this Event

As part of Neurodiversity Celebration Week, we invite you to join us at the first ever Neurodiversity Youth Summit.

Much too often, schools focus on what SEN students can’t do, instead of recognising and celebrating the many strengths and positive aspects of being neurodiverse. This can be very demoralising and can make us loose sight of our talents and strengths.

We are the dreamers. The pioneers. The change-makers. The future business leaders. We are the trailbalzers, The adventures. The discovers. We are the Einsteins and Bransons of tomorrow.

If you are a secondary school student, please join us in a unique evening that will focus on empowering neurodivergent youth to harness their potential, change the way they perceive themselves and view their future as being full of promise and exciting opportunities.

Autism’s Got Talent

There will be performers from Autism’s Got Talent who will be showcasing their talent at City Hall in the City Hall Chambers. This will be a fantastic opportunity for our performers!

Speakers:

  • Joanne McCartney, Deputy Mayor
  • Jennette Arnold, OBE, Chair of London Assembly
  • Whitney Iles, CEO of Project 507
  • Tessy Ojo, CEO of The Diana Award
  • Tab Ahmad, Founder of EmployAbility
  • Dr. Lawrence Fung, Founder of Stanford Neurodiversity Project
  • Anna Kennedy, OBE, Founder Anna Kennedy Online
  • Siena Castellon, Founder Neurodiversity Celebration Week

Note: Students must be accompanied by a teacher or by a parent / adult

  • Date And Time: Mon, 16 March 2020 / 16:00 – 18:30 GMT
  • Location: City Hall, The Queen’s Walk, London. SE1 2AA

Click here to register

Accessibility
Month: February 2020