Anna Kennedy Online – Autism Awareness Charity
Ethan Khumzy: Melanin

Ethan Khumzy: Melanin

Ethan Khumzy created this amazing rap, please watch this powerful video

One of our Autism’s got Talent Performers and Pineapple Performing Arts Charity Scholarship winners Ethan Khumzy shared:

‘This piece of rap I’ve written is called ‘Melanin’.

Melanin is written in the perspective of ‘why do you see me as a bad guy or monster?’ ‘Why am I the gangster?’, it’s written in a stereotypical point of view of other people that are not like me, they would look of people of my colour/race like ‘he/she looks like a gang member’ ‘I don’t like him/her’ ‘they easily get arrested, that’s no surprise’. There are loads of good people of my kind just like any other race. ‘

I am sad – by Pershy Mgadamika

I am sad – by Pershy Mgadamika

I am sad – an article written by Pershy Mgadamika, Mum of Ethan who is one of our AGT performers

The past two weeks have been draining emotionally. A man called George Floyd was murdered by a policeman in America. Yes, in the land of the free. I have cried non stop because l can’t erase that picture from my head. My kids have cried too.

We all can see George as one of us. Why? We are black. Ethan is 17 and on the autistic spectrum. Ever since l can remember l have always told and reminded him he has two disadvantages, black and autistic.

I would love for Ethan to be independent but how can l? I don’t encourage him to go to the high street during college lunch time. I worry so much, what if he doesn’t have enough money and they accuse him of trying to shop lift, what if someone snatches his phone and he gets disoriented and can’t articulate his words to get help; what if him asking for help is seen a different way and he gets into trouble with the police.

So many questions yet no answers. His dad won’t go jogging because the last time he did he was stopped by the police and questioned what he was up to, yes, in Essex.

Now imagine two grown men jogging and the suspicion it raises. So whilst the gyms are closed, they’ll stick to YouTube for keeping fit. So many anxieties right now. In our home, this lock-down has been a curse and a blessing.

I am glad we’re home safe. This is despite my partner being followed by the police a few times on his way to work during this lock-down, he knows to stick to the same speed, doesn’t do anything that might cause them to stop him. We know at that time they’re checking car registration, mot, insurance etc. Unless they suspect you’re illegal, have you heard of wind-rush scandal? Yes that…

Ethan likes to write rap/grime lyrics. The latest one just broke my heart. It’s heartbreaking hearing your child say stop oppressing us, stop killing us. I am a mum to a black and autistic young man. I am afraid for my son’s future. I am afraid for those who hate people like us. Autistic and black, double disadvantage.

Ethan is doing gaming development at college and maybe one day he will be employed in that industry. But statistics show black people and disabled people are more likely to be unemployed in their chosen field despite qualifications and experience.

Those are just some of the things that keep me up at night. Will he ever be employed? Not that he’s not capable of being employed. Or will they call him a lazy block man? A thug?

The murder of George Floyd has allowed the world to hear the voices of black people and what we deem racism. Yet there’s a few who want to silence us when we say Black Lives Matter. As much as I agree with the statement “all lives matter”, why is it no one ever objects when l raise autism awareness.

Not even one person has ever asked why l don’t talk about other disabilities. Do you get the comparison? l am tired of being afraid, we are tired of being afraid for our sons, brothers, husbands, fathers, daughters, mums, sisters, and ourselves.

It’s not just institutional racism, it’s also the subtle racism. Lack of promotions at work, workers who refuse to work alongside black people, managers who ignore black workers when they say I am being treated differently.

Teachers who won’t help our children progress yet they know and can see they’re doing better than everyone in the class. Yet if the child has ADHD they’re called naughty, if it’s dyslexia they’re lazy. They’ll blame your parenting skills if your child is autistic. The list goes on. Everywhere we turn there’s someone saying or doing something to remind us we’re different.

Yet despite all these negative experiences, l will tell you where we’ve found love and acceptance, the autism community. We all know we have the same challenges and we just support and are kind to each other.

Most of my white mum friends have an autistic child. We check on each other, encourage each other and just know the right thing to say especially in this lock-down.

Anna’s guest on Women’s Radio – Claris Angafor Interview

Anna’s guest on Women’s Radio – Claris Angafor Interview

Claris Angafor was Anna Kennedy’s guest last week on ‘All things Autism’ on Womens Radio Station.

Anna first met Claris at our charity Autism Expo two years ago where Claris was looking for more information on autism and looking at strategies to work with her son. Here are the details of the interview:

My name is Claris Angafor, I’m  married   and a mum of 2 gorgeous  boys. 14 year old who is autistic and a 9 year old.

I am an autism ambassador and advocate. I am the founder of CAN-Abilities Foundation(UK registered charity since September 2018) and owner at CAN-Decor Ltd.

I am a passionate, resilient, dedicated and caring individual.  I believe that any child no matter the circumstances under which they were born, deserves to be well looked after, loved, understood and accepted by all.

I like to describe myself as a voice of hope and advocacy to those who have experienced those issues which most often are deemed too sensitive or emotional to talk about. Since what one gives a voice to has the power of changing one’s life.

Most parents especially from the BAME community rarely talk about their autistic children, what motivated you to become an autism advocate?

 At first it used to be very difficult just letting friends and family know that my son has a disability and worst of it being a disability that cannot  be easily seen, like autism.

When parents have a child with a Disability they also go  through the stages of grief and loss https://www.toolshero.com/toolsheroes/elisabeth-kubler-ross/

They grieve the child they thought they would have. 

This happens because most mothers, when  pregnant do not expect anything to go wrong with their baby after delivery. 

All parents have anticipations, aspirations,  dreams and wishes for their children.  All parents are excited and full of expectations, to hear their child’s first words, see them achieve their milestones at appropriate time.

Unfortunately,  sometimes, our expectations fail us especially when your child has been given a diagnosis for autism or any other disability, be it visible or invisible.

So I went through all these stages of denial, anger, bargaining,  depression and before acceptance.

Also, one goes through shame, blame from individuals be they friends, family or just people we see on the streets or in the community. Individuals or other  children look at your child and they laugh, bully and intimidate him.

At some point, I used to get very angry with people walking away from my son, even at events, people will not sit at the same table with us. Other children will describe him as mad.

This used to hurt me quite a lot and at times we ended up just staying at home which could have let to isolation in the long run. As the years went by, I discovered this was taking a toll on all of us.

I started working on my mindset by acknowledging the fact that individuals have the right to think or behave the way they wish. And it was down to me to react to whatever they said or not. I therefore, told myself that I was going to treat anyone who says anything negative about any autistic individual as ignorant and needing some form of awareness or education.

Also, if as parents,  we understand,  love and accept our children with autism, others will do same. And if we don’t explain or tell our stories /autism journey, they will never know. I therefore decided to train as an autism Ambassador/advocate.

So I started with raising awareness through talks at small gatherings. It was at this point that I discovered that once one shares their story, they feel liberated and give their child a voice. I also did a Post graduate degree in autism and asperger all in the quest to improve my knowledge in autism.

As a parent with an autistic child, what are some of the challenges you have faced or are still facing

  •  Lack of proper understanding about autism and the autistic individual’s
  • Lack of proper support for my son and the entire family
  • Individuals not wanting to understand or help autistic individuals
  • Difficulties having proper speech and language therapy for my child
  • Lack of proper care/attention at the hospital. When an autistic child goes to hospital, proper checks are not made because everything is put down to his autism and if he doesn’t cooperate, doctors do not follow up on him after he has gone home.

You took your son to Cameroon for holidays some years back, what was your experience? How did people treat him?

Then my family was completely new to autism and it was their  first time meeting my son.  Some were afraid, some were angry, some were just indifferent.  So it was a mixture of different feelings from individuals. But one of the things which I discovered which hurt me so much was the fact that I was treated like a complete stranger by my family. There were individuals who will completely ignore my son and never said a word to him or just to ask how he was doing under the assumption that since he doesn’t speak and therefore does not understand.

I went home ready to teach and educate people especially my family about autism.

So before we left the UK, we had communicated with the speech and language Therapist from school  and she had helped us laminate postcards on autism, we had PECS for the whole journey and information on autism to distribute to people on the plane.

There were some instances where people will stop us along the streets to give us pastors’ phone numbers to pray for our son to be healed.

There was an instance in a travel bus  where a lady told me not to allow my child to my  go out of the bus when it stops for security checks because according to the lady,  my son was ill(Some people still see autism as an illness).

Younger children were fascinated by my  son’s stimmings, flapping, vocalisations. Some were amazed with the fact the he doesn’t talk but is very good in the use of technology.

The most disturbing part of the experience was the stares, whispers behind ones back, laughter and even insults. But as a parent, of an autistic child, I have developed thick skin, and deliberate blindness to such behaviours.

As a parent I found  it difficult and embarrassing when my child demonstrated unusual behaviors in public which I had to start explaining to some people like:

  • Inappropriate touching or invading other people’s space
  • Flapping hands or spinning around
  • Being fascinated with a particular item
  • Extreme displays of affection or the opposite. My son is very cuddly and if he loves someone he openly shows this by trying to kiss the person.

What advice can you give parents with autistic children.

The most important advice is a quote which I share with  all parents :

  • “Parents, don’t think that there’s a different, better child hiding behind the autism. This is your child. Love the child in front of you. Encourage his strengths, celebrate his quirks, and improve his weaknesses, the way you would with any child”.(Claire Scovell LaZebnik, author of Growing Up on the Spectrum).
  • Understand and do further studies about autism
  • Be the voice of your child
  • Make sure you attend all meetings involving your child and if possible take another person with you.
  • Ask questions in case you do not understand and seek a second opinion.
  • Join a community of special needs parents.
  • Always make notes for future purposes.
  • Share your child’s story with those who matter and those who wish to learn.  You may be inspiring and helping someone heal
  • Love,understand and accept your child the way he/she is.
  • As a parent, whatever you do, don’t give up on your child. Keep battling alongside them.
  • They need our help with patience, guidance and love.
  • Laugh as often as possible

How do you think people can best support parents with autistic children.

  • Involve both parents and their children in community activities
  • Please always check on parents. Most parents of autism are quietly battling the devastating effects of depression Amen some.
  • Parents take breaks and ask friends or family members to help babysit

Do you think a lot of awareness is needed in this area?

Oh yes,  a lot of awareness is  still needed maybe not as much as before but awareness is still vital. Autism is not a word  to be feared but a child to be loved.

Claris Angafor

The voice of Hope and Advocacy

Womens Radio Station ‘All things Autism’ guest Reena Anand shares: Autism and Culture

Womens Radio Station ‘All things Autism’ guest Reena Anand shares: Autism and Culture

Anna Kennedy OBE’s guest this week on Womens Radio Station ‘All things Autism’ is Reena Anand. Reena shares her story with Autism Ambassador Anna Kennedy OBE:

‘Reena is a mum of two boys aged 3 and 6, the eldest of whom is autistic. Whilst convalescing following an operation last year, she started writing about her experience as an autism parent and the stigma surrounding autism in the Asian community. Her blog posts have been read internationally by thousands of people with readers reaching out to Reena both for support and in gratitude for openly and proudly talking about her autism experience (reenaanand.com). 

By day, Reena is an ombudsman and strives to make a difference not only through her work but by coaching colleagues who have received an autism diagnosis navigate support systems and resources. She’s arranged autism awareness training at work and at her son’s school and is currently organising further training and fundraising so that the teachers can provide more tailored support to its autistic pupils.

Reena talks about her fear when she received her son’s diagnosis knowing nothing about autism and what this might mean for his future. However, she used the diagnosis to learn about autism and to research parenting strategies and interventions to best support her son. Reena secured an EHCP for him and adapted her traditional parenting style to best serve his needs, for example by involving her son in key family decisions.

Reena talks about how her son’s needs inform where they go and what they do and she openly explains to friends and families the impact certain environments can have on him.  

Reena says that there is still some discomfort in the Asian community about autism and people often struggle to talk about or acknowledge her son’s autism. Reena wants to promote autism education and awareness in the Asian community so that all autistic children have the opportunity to access support and interventions as early as possible. Reena cites The National Autistic society’s Diverse Perspectives research in the interview and how the subject of shame featured strongly in the Asian community – something she’s keen to address.

Reena talks about her own parents’ struggle as first generation Indians in the UK whose focus was on economic survival so they could provide opportunities to their children which weren’t available to them. She says that there was less of a focus on emotional intelligence or feelings dialogue and academic prowess became synonymous with success. She says that autism can be perceived as a threat to this success which is why many Asians may be afraid to accept the label or the diagnosis.

Reena talks about adopting collaborative – rather than obedience led – parenting and considering success to be anything where our children are feeling fulfilled and are pursuing their life purpose. She’s adopted this with her own children and advocates that the wider Asian community consider this approach. 

Reena is committed to serving her son and others by speaking about autism to create greater tolerance and understanding about it. She writes about being an Asian autism parent in her blog (reenaanand.com) and through video blogs on Instagram (reenathewriter) and Facebook (Rewriting the Script by Reena Anand). ‘

If you missed our interview it is aired every day this week at 1pm and 1 am: www.womensradiostation.com 

Ladies of All Nations International celebrate families who are positively impacting the community

Ladies of All Nations International celebrate families who are positively impacting the community

Beautiful Survivors is an initiative dedicated to recognising people who have been victims of circumstances beyond their control but still emerge as winners. We also want to recognise families who are impacting the communities.

The Patil Family were selected to receive a special recognition award as a Living Testimony of faith and perseverance.The family was recognised as truly remarkable, on a mission to create positive change, inspiring others and impacting people in a positive way.According to Mrs Patil, it was an extremely emotional moment to see Disha and her husband Dayanand Patil sharing the stage to receive the award.

“Seeing the stories of so many Beautiful Survivors, I felt there are so many brave and courageous people around who have seen more tough things than one can imagine and the way they face the world and win is commendable. We as a family are extremely thankful to LOANI for recommending our name, giving us a feeling that we are a bigger family.It was an honour to receive the award from very inspiring Dr Anna Kennedy who is the founder of Autism’s Got Talent.” According to the CEO of Beautiful Survivors, the aim is for beautiful survivors to be part of a great initiative, saving and transforming lives.

The Patil family is one of the families we will be working with to create more awareness for parents with disabled children. We are now working on hosting special parents workshops where patents with disabled children can connect and share ideas.

Next month we will be hosting special mums coffee mornings. We want to appreciate them and give value to their lives.The Patil family have made a real positive impact to other parents.

http://www.loaniglobal.co.uk/

Source: https://ablemagazine.co.uk/ladies-of-all-nations-international-celebrate-families-who-are-positively-impacting-the-community/?fbclid=IwAR0N67uOzu4dUhC_mkrtTi2eu8NYFy7tgJdMQFIH9I2Ah3cbb-iII2hPUPs

“Did you hear about her son?” – Shattering the Stigma around Autism in the Asian Community

“Did you hear about her son?” – Shattering the Stigma around Autism in the Asian Community

What is it that makes us Asians so uncomfortable talking about autism?

I’ve found that there’s a lot of misunderstanding – and a general lack of understanding – in the Asian community about hidden disabilities. I remember telling an aunty that my son was autistic and she replied: “There was no such thing in my day; it’s just the concoction of over thinking by western doctors who have nothing better to do.  Parents just need to be firmer with their children”. Sound familiar?

I’ve noticed that it’s far easier to discuss physical disabilities with others in the community because they’re more obvious. And people seem more sympathetic and able to reconcile the child’s condition with God’s will – but that’s not the case with hidden disabilities like autism.

Asian ways

Even though we may live in Britain, we’ve kept a lot of our Asian ways for example, through celebrating rites of passage, observing religious days and practices and cooking traditional food. But in other ways, it seems we still need to progress our thinking about the world around us.

I’ve observed that as a community, we place a lot of weight on how others perceive us – and sometimes make counter intuitive choices based on what we think we should be doing.  And talking about having an autistic child ventures into the realms of extreme discomfort because many Asians don’t know what it is, how it manifests and why you need to engineer your life differently around your child compared to others.

Crossroads

But we have a choice; we can seize this opportunity to educate those around us about autism and break down some of the misconceptions about our children. Or we can carry on as normal, telling no-one, putting our children’s behaviour down to simply not listening and contributing to a future where they fail to be understood and are marginalised for not fitting in. 

The impact of the choice we make is not to be underestimated. By not talking about our autistic children we create a sense of nervousness and shame around the subject. And so, we show up as introverted and uncomfortable. We tell ourselves stories that people might be judging us behind our backs and perceive our family negatively and that our children’s marriage prospects will be restricted. And because we present laden with all this emotional baggage, we end up attracting negative misconceptions from those around us.

Choosing a different path

I’m not prepared to subscribe to that.

Instead of shying away from my son’s autism, I’ve told everyone in our family what it is and how it affects him. Because of this, people now ask me how we are from a place of genuine concern. However my day’s been, I can be honest and authentic talking about it because by bringing them into the world of autism, I’ve effectively given them permission to ask.

By wearing different personas for the different people we’re meeting, we run the risk of losing touch with whom we really are because we’re so obsessed with ensuring the right persona is in place for the group of people we’re interacting with; whether it’s the aunties at the mandir* or the relatives at a wedding.

By committing to just being you – raw and authentic – you can conserve all of the energy spent trying to be the person you think others want you to be and instead spend it on the person who deserves it most – you.

But, how?

“Ok but if I’m going to a function and I know my child struggles with big crowds, what am I supposed to do?”. The answer is, whatever it takes so that he’s comfortable and so are you.

If that means no Indian clothes, wearing ear defenders, arriving towards the end of a ceremony so that he doesn’t have to hang around for hours with unfamiliar people or asking the host to seat your family somewhere specifically – then so be it.

You’d be surprised how accommodating and understanding people can be when we let them into our world and show them how these changes can make such a difference to the experience you and your family have. 

Tailoring experiences

Last week, I took my six year old autistic son to a bhajan sathsang* which I’d never before done. I’d attempted to run simple family prayer sessions at home previously and gave up because he just couldn’t sit still and was only interested in touching the bells, idols and the artificial (and real) tealights. Despite that, I thought I’d give this a go. I told the host family I was coming with my autistic son and I’d like a place near the front so he can watch the musicians, to which they happily obliged. My son sat for over an hour attempting to sing the songs and enraptured by the orchestra playing around him. By being open and honest, I created a completely different experience for us.

Great expectations

There’s a lot of expectation in our community of mothers being strong and holding it all together but being the parent of an autistic child is exhausting; anticipating their needs and creating a world around them where they feel comfortable and secure takes a lot of energy. So it’s important that we stand up to the stereotyped Mother India* image and ask for help.

Asking for help isn’t a sign of weakness; it’s a sign of strength because it shows that you’ve identified what you want to achieve and you’re using your resources to make it happen.

If your boss asked you to put a pivot table together urgently, would you bury yourself in online tutorials or ask your Excel proficient colleague for help? We’d utilise the resources around us unashamedly to deliver the task. So why don’t we do this for ourselves?

What do you need?

You can’t pour from an empty cup. It’s important to think about what matters to you and to move things around to make it happen. I need time and quietude to be able to write. But my kids are like bulls in china shops and I don’t want to silence them with movies. Instead, my husband has moved his weekend run from Sunday mornings to Saturday afternoons so he can drop my eldest to drama (whilst toddler naps), go for a run and then collect him. This gives me one and a half hours to write. And I’ve created similar pockets of time across the weekend to dedicate to exercise, writing and self care by asking for support from those around me.

United we stand

There is so much strength to be derived from being part of the Asian community. But unless we’re prepared to be bold and go out there, sharing our experiences and talking openly and proudly about our autistic children, the community won’t move ahead with us and we’ll end up abandoning it as archaic and rigid all because we were afraid of how people might react. 

Our children deserve to benefit from India’s rich, cultural heritage as much as any other; let’s pave a path together in the world where they’re embraced and celebrated – just as they are.

*temple – a Hindu place of worship

* bhajan sathsang – a public gathering at someone’s house where religious songs are sung

*Mother India – 1957 Bollywood movie about “a poverty-stricken village woman who, in the absence of her husband, struggles to raise her sons and survive… Despite her hardships, she sets a goddess-like moral example of an ideal Indian woman”. (source: Wikipedia)

Reena Anand

FB: Rewriting the Script

Insta: reenathewriter

Blog: reenaanand.com

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