Lisha Rooney talks Autism and Shakespeare to Anna Kennedy OBE on Womens Radio Station

Lisha Rooney talks Autism and Shakespeare to Anna Kennedy OBE on Womens Radio Station

 Lisha Rooney was Anna Kennedy OBE’s guest this week on
‘All things Autism’ 

It was great to chat with Anna Kennedy OBE about the amazing experiences my son Lumen has had at Flute Theatre.

Kelly Hunter – the founder – and all the actors in Flute Theatre have given us something that combines occupational therapy, speech and language therapy, art therapy, and meditation.

Flute Theatre sessions engage children and their families in Shakespeare productions by incorporating the Hunter Heartbeat Method, something Kelly has developed, along with songs, rhythms, dancing, and games. It is a completely relaxed environment, very inclusive, very engaging, and most important to me, non-judgmental. The children and families are allowed to be who they are in the space. And the added bonus is I am learning more about Shakespeare, as we’ve explored The Tempest, Midsummer Night’s Dream, and Pericles. It means a lot to me to be an ambassador for Flute, which has an autistic board member and is keen to celebrate difference.

Thank you Anna for allowing me a chance to discuss Lumen’s diagnosis when he was three years old and how our lives – my older son Enlai’s, who is now 12, Lumen’s, who is now 7, and my own – since the diagnosis.

We wholeheartedly embrace Lumen’s autism and celebrate neurodiversity. Enlai has written blog posts, articles, and created presentations on his experience as a sibling of an autistic brother. I’ve taken on the role of governor at Queensmill School in London, which Lumen attends. I am an advocate for inclusivity, particularly within the arts realm. As a family, we’ve participated in the research project ‘Changing the Face of Autism Research Together’ which invited families with an autistic member, autistic researchers, as well as neurotypical researchers to come together and discuss their respective experiences.

It was great to learn that we are on the same page with exposing our autistic children to new experiences, including relaxed sessions at museums, theatres, and other exhibitions. And how we believe that every accomplishment – which may seem minor to anyone else – is a cause for celebration. 

Incredibly grateful for the chance to tell you all about WhatDo, our family-owned, autism-friendly social impact clothing brand celebrating neurodiversity and donating 5% of profits to Queensmill School. We are all very excited to share our super soft bamboo fabric, tagless shirts with inside out, red seams. We set three goals when we embarked on the WhatDo adventure: comfort, the celebration of neurodiversity, and eco-friendliness.

Details

If anyone wants to find out more about Flute Theatre, go to the website www.flutetheatre.co.uk or contact Kelly at kelly@flutetheatre.co.uk. You can also follow on Facebook, Instagram, and Twitter. If anyone wants to donate – as Flute Theatre has no core funding – you can click the donate button on the Facebook page or click here to visit their Just Giving site.

If anyone is keen to find out more about WhatDo, please follow us on Facebook, Instagram, and Twitter and watch this space for the website launch at www.WhatDoHQ.com. You can also contact lisha at lisha@whatdohq.com.

If you missed Lisha’s interview it is repeated every day this week at 1pm and 1am on www.womensradiostation.com 

Emma Kaye Play Therapist talks to Anna Kennedy OBE Womens Radio Station

Emma Kaye Play Therapist talks to Anna Kennedy OBE Womens Radio Station

Emma Kaye is Anna Kennedy OBE’s guest this week on ‘All things Autism’ . Emma tells about her role as a play therapist and SEND Teacher.

My name is Emma Kaye and I was born in Dover to young parents. They travelled around the country a lot, running hotels, restaurants and cafes. So I spent the first 11 years of my life living in different parts of the country. When I was 11 years old we moved to Kent and stayed! I’ve been settled in Kent since then, where I studied to become a Nursery Nurse (NNEB), Teacher (BAQTS Hons), SEND Teacher and Play Therapist (PTUK). During that time I met my husband and had two children.

How did you become involved with Autism?

I first became more intensely involved with Autism, when I had my son in 2006. He was diagnosed with Autism in 2013, when he was 5 years old. Then with Dyslexia at age 6 and Dyscalculia at age 10. It was important for me to support him and get what he needed, so I started to read up on Autism and attend additional training, as a parent and professional. Then my husband was diagnosed in 2016, at the age of 47. His diagnosis of Autism has been really positive for him and for our relationship. He now realises why somethings are harder for him and I know realise why he behaves in certain ways.

I also became more involved with Autism and the EHCP process, when my son was really struggling at school. I was told he was; “just badly behaved and not very bright”. That made me even more determined to get what he needed and for others to understand how Autism and Dyslexia presents.

I then joined the Specialist Teaching Service in 2014, where I would advise schools and nurseries how to support children with SEND, in their settings.

Why did you set up The SEND Trainer business?

Due to huge caseloads as a specialist teacher, I felt I couldn’t make enough impact for those children and families/schools. I also didn’t have enough time to give schools and nurseries adequate training and input on SEND. So in September 2018, I set up my own business, delivering training on all areas of SEND to schools, nurseries, organisations and other groups. I also started offering home visits to parents and affordable SEND workshops 6 months ago.

As part of my business, I work as a Therapeutic Play Practitioner delivering Play Therapy for 2 schools in Kent. Play therapy is an amazing way of helping children process Trauma and to support those children on the Spectrum, develop social and play skills, communication and interaction skills. It enables the Autistic child to be their true self, which builds self-esteem and confidence.

Also with waiting lists for an ASD/ADHD diagnosis in Kent, is currently 3 years. During that time parents struggle to access parenting support around these conditions. You often have to have a diagnosis in order to access any parenting support. So this was another reason I set up, The SEND Trainer, so I could offer parenting workshops. One of the most popular workshops offered is Meltdowns and Shutdowns.

Meltdowns and Shutdowns occur when the child or young person becomes too overloaded. The brain then triggers the fight/flight/freeze response. This then makes the body react to keep the child safe. The child who meltdowns, might hit, kick or punch is seeking proprioceptive (sense in the body that deals with body awareness) input.

The best thing to do when the child or young person is having a meltdown or shutdown, is to let them know they are safe, then stop talking, reduce sensory overload and just be present in the room with them, until they are calmer. When you notice they are calmer, offer them something they like for comfort, but still don’t talk. Then much later, when they are regulated talk to them about how hard it must have been for them to feel out of control. 

What is the impact of Mental Health on Children and Young People with Autism?

In Kent referrals to CYPMHS is 14,189 children (July 2019 data), with over 9,092 of those on the neurodevelopment and learning disability pathway. Mental health of Autistic children and young people is often overlooked, as part of the condition. Mental Health permeates everyday life, due to the following challenges; Language and communication, social understanding and relationships. Challenges with lack of flexible thinking and social imagination, sensory processing needs and memory and processing needs.

Autistic females are more likely to experience high rates of depression and anxiety. Beginning in their teenage years, there’s evidence to suggest that autistic girls commonly develop mental health issues, including depression, anxiety and eating disorders. This is often associated with girls ‘masking’ their condition and therefore not being picked up earlier.

My top tips for parenting an Autistic Child

  • Remember sensory issues are going to change daily and are impacted by anxiety.
  • Always practice using a sensory toolkit (ear defenders/headphones/hat. Sunglasses, fiddle toys, crunchy snacks, small lavender bag, visuals), before taking it out to use.
  • Plan and prepare for trips, visits, days out, shopping trips in advance and visually. Look at photos of the place you are visiting, talk about what you MAY see! Make the experience as predictable as possible. Use a ? Visual to show change that can’t be planned for.
  • Use visuals (sand timers/timer on phone/Alexa/photographs/calendar/) to give the command and to help the child process the transition and change.
  • Teach deep breathing and self-regulation strategies and how their body responds to anxiety and stress. Teach yourself self-regulation strategies to stay calm, as your child will regulate from you!!!!

Emma Kaye – Freelance SEND Teacher, Trainer & Consultant/Play Therapist

Email: e.kaye@hotmail.co.uk

Facebook: https://www.facebook.com/thesendtrainer/

Emma’s interview can be heard this weekend at 1pm and 1am on www.womensradiostation.com

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.

Accessibility
Month: February 2020