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Understanding Dwarfism-Challenging Myths

 

This is a great video which helps to educate people about dwarfism. It challenges the myths and encourages an understanding that people born with dwarfism have the same jobs, daily routines, passions for sport and family life aspirations as everyone else.

I remember meeting Nichola who features in this video when my son was just four months old. I was always impressed by her positive outlook on life. Seeing her as a professional woman and mother who just happened to be born with achondroplasia like my son gave me such encouragement that my baby would one day be able to achieve whatever he put his heart and mind to.

Competitive sport has become part of my seven year old’s life because of the work of the Dwarf Sports Association (DSA) which has given him opportunities to compete against his peers. The reality for Samuel amongst his peers at school is that he will always be disadvantaged in a running race or sporting competition as his legs are shorter. However at the DSA annual games event in Birmingham, UK, he can do athletics and team sports and have a good chance of winning.

 

Samuel returned from the DSA this year with a medal for every event he competed in, this was such a boost and encouragement for him. Ellie Simmonds (GB Paralympic swimmer), and Patron of the DSA even presented him with one of his medals.

(Samuel’s medals- Gold: 20 metres running, Silver: 10 metres running, Silver: new age curling, Silver: cycling, Gold: football, Gold: hockey)

 

 

Celebrity endorsements for edition two of Strong and Mighty Max

Sporting celebrities Ellie Simmonds and Jahmani Swanson have both agreed to endorse edition two of Strong and Mighty Max.

Ellie is a British Paralympian Swimmer who was born with achondroplasia like Max. She has become famous around the world for her Paralympic success, competing in S6 swimming events. She made her debut on the world stage at the age of 13, when she competed for Great Britain in the 2008 summer Paralympics in Beijing, winning two Gold medals. Her success continued in 2012 at the London Paralympics when she won another two Golds, including setting a World Record in the 400m freestyle. The most recent Paralympics held in Rio in 2016 Ellie went on to win another Gold, this time setting a world record for the 200m medley.

Ellie continues to be a great role model for young people, and plays a vital role as patron of the Dwarf Sports Association (DSA) where she spurs young people on to achieve their dreams in competitive sport.

Jahmani Swanson, otherwise known as Mani Love, became famous for his skills and talent on the basketball court. In 2017 he signed with the Harlem Globetrotters. Born with dwarfism, like Max, he is 4-foot-5 inches tall and is arguably the shortest professional basketball player in the world.

Both Ellie and Jahmani feature as positive role models in the learning activities at the back of the book, and you can learn more about their success by watching the videos which feature in the learn section of this site.

Edition Two of Strong and Mighty Max will be available later this year from online retailers: Waterstones.com and Amazon.com. The book will also be available as an e-book which can be downloaded from amazon. To register your interest in the second edition of this children’s story, click here.

 

BBC4 Documentary to feature Strong and Mighty Max

Strong and Mighty Max will feature as part of  a BBC4 documentary exploring the history of people with dwarfism through the arts. The working title of the production is:

‘Dwarfs: A Short Film About Art’

In this visually evocative film, Richard Butchins will explore a hidden chapter in the history of art, revealing how the depiction of people with dwarfism in painting, sculpture and photography speaks volumes about society’s shifting attitudes towards disability.

 Strong and Mighty Max Book Cover

This short film focuses on art, but it will say much about the social history of people with disability and how they were viewed, and it will bring important new voices into the debate, featuring the untold historical memoirs of court dwarfs, the rarely heard voices of artists with dwarfism and the fresh perspectives of academics today. Source: What Larks TV

The Broadcast date is TBC.

When Everything Was New

We did not find out that our son had suspected dwarfism until he was born. I remember those early days so well-being thrust into a new world that I had never thought about before. We knew so little and yet before long we were to become experts about achondroplasia, a word that was new to us and many of our friends and family. There was a 1 in 25,000 chance of us having our son born with achondroplasia. The same chance as anyone else who are parents and do not have a family history of the condition. Our baby was rare, so rare that not all the health professionals that we were to encounter in the early days knew much about the condition.

Achondroplasia was not in our genes, in fact our baby was a result of a genetic mutation that happened at conception. His DNA was known before he began growing in my womb, however medical technology does not pick it up until around 28 weeks on scans. So most children born with the condition are not diagnosed prenatally. Having a baby was not new to us, our first venture into parenthood was the surprise of non identical twin girls. But perhaps an even bigger surprise was our much loved boy. I don’t think I had ever met someone with achondroplasia before. I read that the condition was classed as a disability- another new term in our family. I read so much online in those early days, a lot of which was not helpful to a mum coming to terms with a diagnosis she wasn’t expecting.

I guess the reason why I am writing this today is for other parents who may have found my blog and have also found themselves on a new journey, a road they perhaps had not planned. Coming to terms with a change in trajectory can have its mixture of emotions and initially you may find yourself taking steps forward a day at a time as you readjust to this new place. Many new parents find this poem a helpful explanation.

My journey has moved along steadily from being informed so that I could best care for my child. These guidelines were perhaps the most helpful read in the early days, followed by meeting with a specialist at Great Ormond Street Hospital (GOSH) who reassured me of what medical issues I was to look out for and reminded that I was not to worry but to enjoy my son. In fact after that meeting I never looked back and the joy has been indescribable at times. (Thank-you Dr Wallis)

So the newness continues- our family have made new friends, attended sporting events and social gatherings that we would have never done before. Our respect has grown for geneticists, researchers, bloggers and charities that advocate on behalf of minority concerns. Our eyes have been opened to a new understanding of what life is like for people who have been born with a disability. I have watched videos that explain my son’s condition, and read books that promote understanding of difference. I would highly recommend the story ‘Wonder’ by R.J.Palacio. The word dwarfism is not mentioned once and yet the similarities of seeing through the lens of someone born with a physical difference is powerful for everyone to read.

I for one have become passionate about the language that is used in the media to describe someone with my son’s condition. Educating other people has become a way of life, challenging mindsets of the beauty of difference and valuing each person that you meet has become a new norm for me and my family. Knowing that every person you encounter has a story has taken on a whole new meaning for me. The importance of taking the time to listen, engage and be sensitive to others whose lives and backgrounds are different to my own is a new priority in my life. Above all things my appreciation of kindness is greater than ever before, knowing that a kind word and gesture are perhaps the greatest legacy we can ever leave behind.

Becoming an author was new for me too. Not something I had planned or aspired to, but something that I have enjoyed nevertheless. Telling a story that educates children and their parents about my son’s condition has been a joy. Seeing my own children read the story to their friends, and above all my son owning it as a way of communicating his difference has given me tremendous satisfaction. If you find yourself on a new journey, perhaps an uphill struggle at times. Let me encourage you with these words, ‘often the most challenging  journeys lead to the most beautiful destinations’. Don’t lose heart, embrace the new one day at a time and just see how much richer your story will become.

Edition Two of Strong and Mighty Max, seeks to encourage children to value kindness above all other attributes. It encourages young minds to take the time to learn from others and celebrate differences. After all, the world would be a boring place if we all looked the same.

 

 

Video: Hamish McClean

Dream Big is a theme in the story Strong and Mighty Max. Hamish McClean achieved his dream; Paralympic swimmer for New Zealand.

Hamish encourages young people to reach for their goal in life.

Video: We are all different

We are all different, this short video explains how a person with autism sees the world. It explains how everyone’s brains function differently. A great video to introduce to students when discussing visible and invisible disabilities.

Video: Interview with Ellie Simmonds

Eleanor May Simmonds, OBE is a British Paralympian swimmer competing in S6 events. She came to national attention when she competed in the 2008 Summer Paralympics in Beijing, winning two gold medals for Great Britain, despite being the youngest member of the team, at the age of 13. In 2012, she was again selected for the Great Britain squad, this time swimming at a home games in London. She won another two golds in London, including setting a World Record in the 400m freestyle, and a further gold medal at the Rio Paralympics in 2016, this time setting a world record for the 200m medley. Credit: Wikipedia

Video: Roberto Pino

Roberto Pino has become a hero in Brazil as his nation’s only competitive surfer born with dwarfism. Despite measuring just 136cm (4ft 5) Roberto competes against non-disabled rivals and has blown them out of the water in national contests. He made history as the first dwarf ever to claim gold in the over 35’s category of a state competition, achieving a lifelong dream. (Credit: Daily Star)