Moving mountains
The protagonist in Michele Ziolkowski’s first novel has autism and is based on her son Suhail. The book aims to raise awareness about the condition
As a baby, Michele’s son Suhail had reached all his developmental milestones before time. By the age of one, he could make eye contact, point, talk, mimic nursery rhyme actions and songs... He was also a very friendly child, always smiling and happy. However, by the time he turned two, Suhail had lost all of these skills, becoming quiet and withdrawn. ‘As a parent, it was heartbreaking to watch him regress; it was the toughest emotional challenge for me,’ says Michele.
Suspecting he was in the autism spectrum, she had him officially diagnosed when he was five.
‘There were so many unknowns to try and factor in that it was all quite overwhelming. It was like drowning in a flood of emotions. But it was vital for me to pull myself together and try to formulate a plan that would help Suhail,’ she says.
The next challenge was trying to locate the best therapy options. Since the family was based in Fujairah, they had to drive down to Sharjah or Dubai for speech and occupational therapy, up to four times a week.
In 2014, they moved to Abu Dhabi, mainly to enrol Suhail in the New England Center for Children based on the IEP (Individualised Education Program).
Now 11, Suhail is happy in a school environment where he is accepted, understood and loved. ‘His teachers and the support staff are amazing individuals. He is racing through his current IEP and continually reminding us of how much he does understand,’ says Michele.
‘Most people believe individuals with autism don’t comprehend what is going on around them. That is a gross underestimation. Suhail regularly surprises us with his acquisition of language skills, level of comprehension, and empathy. He is aware of his environment, maybe even more than we are.’
Other challenges they faced initially were people staring, pointing and commenting in public. But with an increase in autism awareness campaigns and government initiatives, Michele says this doesn’t occur as much now.
‘As a parent of a child with special needs, one of the toughest hurdles is to overcome that feeling of loneliness. It is essential to have friends and family that you can confide in. I was lucky enough to have a close friend in Fujairah who was experiencing a similar situation with her child. We had each other for mutual support, and we still do. Community support groups are also helpful, such as the Autism Support Network and Goals UAE.’
Having studied archaeology and art, Michelle decided to put her talent into making the world a better place for children like Suhail. She narrowed in on a children’s book, and what better muse than Suhail? So the fictional Suhail also has autism and discovers the world through his own eyes. Set in the mountains of Fujairah, where Suhail’s paternal grandmother lived, the book is called The boy who knew the Mountains.
‘The book was not only a creative endeavour but also a way that I could try and reach a wider audience with a fundamental message of acceptance. It provides the perfect vehicle to reach a young audience, and to create a positive shift in attitude within our community. The book highlights autism and focuses more on the abilities of an individual than the challenges. Our children with autism will grow up to be adults with autism, we need an understanding and accepting society to pave the way for their futures,’ says Michele.
Published in 2016, the book won the Best Children’s Book award (English) at the Sharjah Children’s Reading Festival earlier this year.
A 10-minute animated film based on the book is also on the cards. It will be in Arabic with English subtitles and will be produced by Yazan Al Ghazzawi, head of film at the School of Audio Engineering (SAE) Institute Dubai.
Currently, Michele is finetuning her second book based in Abu Dhabi, called Suhail’s Abu Dhabi adventure. Set in pre-oil era, this time Suhail will be exploring old areas like Maqta, Umm An Nar and Qasr Al Hosn.
‘I have been lucky to have an incredibly supportive publisher, Ali Al Shaali of Hudhud Publishing in Dubai,’ says Michele.
But raising awareness is an ongoing process and Michele is constantly at work through her social media accounts for The Boy who knew the Mountains.
She also conducts book readings at book fairs, schools, community events and through initiatives such as WannaRead and the Emirates Airline Festival of Literature.
As for Suhail, he is thriving at the moment. His verbal communication improves daily and creates less anxiety for him because he is able to get his message across.
Suhail knows that The Boy who knew the Mountains is his story; he enjoys looking through books and reading together. He is eagerly waiting for the second book to come out, says Michele.
For more information, facebook.com/ theboywhoknewthemountains/
An animated film based on the first book is on the cards. It will be in Arabic with English subtitles. A second book is also in progress