Everything was going according to plan in Insiya Shakir’s life: education, career, marriage, a healthy son. But an unexpected complication at the time of delivering her second child changed the trajectory of her life.
In her new memoir Unplanned Journey: The Heartfelt Story of a Special-Needs Family (Embassy Books, INR 395), which released this month, Shakir shares the challenges and victories that come with parenting a special-needs child.
In candid prose, Shakir – who is based in Mumbai and Dubai – shares touching moments of courage and grief, her fears for her family’s future, and her determined efforts to do the best she can to help her baby thrive. She also outlines practical strategies for fellow special-needs parents and her own ‘toolbox’ in ensuring self-care and inner strength.
Eventually, though, this book is not just a guide for special-needs families. It is also one woman’s personal quest to understand her purpose in life and fulfil her mission in the world. Here is an excerpt published with permission from Embassy Books.
By Insiya Shakir
There is a world within a world that often escapes the notice of ordinary families, simply because they haven’t had the chance to understand it. This is the world of special needs. For us, as special-needs parents and caregivers, it is crucial to educate others and share our personal stories. By doing so, we can dispel any fears, misconceptions, and myths that often surround special needs.
Our journey is filled with unique challenges and incredible moments of joy. We understand our children in ways that others may not. By opening up and sharing our experiences, we can help others see beyond the stereotypes and misunderstandings. We can show the world the beauty and strength in our children, and in doing so, foster a more accepting and empathetic society.
Imagine a world where everyone understands and respects the differences that make each of us unique. By sharing our stories, we take a step toward creating that world. We help others replace their fears with understanding, their misconceptions with truth, and their myths with reality. Together, we can build a community where all children are seen for their abilities and cherished for who they are.
In sharing our personal journeys, we not only educate others but also build bridges of empathy and support. Our stories have the power to change minds and hearts, paving the way for a more inclusive and loving world for our children.
ADVOCATE
As special-needs parents, we have an incredible opportunity to be our child(ren)’s biggest cheerleaders and loudest advocates. Advocating for our special-needs child(ren) ensures they receive the support, services, and opportunities they need to thrive. In the process we also help break down the barriers and misconceptions that often lead to exclusion and discrimination.
One powerful way to start is by connecting with other parents who are also raising children with special needs. Together, we can advocate as a collective voice for our children’s rights. Through collaboration, we can share information, gather data, and work towards a positive change in our communities.
As caregivers, we can play a vital role in advocating for an inclusive and nurturing environment for our children. This means actively reaching out to schools, organisations, and policymakers to advocate for inclusive policies and practices.
Inclusion in its truest sense means creating fair opportunities for everyone, regardless of their abilities, to fully participate and engage in schools and workplaces. It is also about ensuring that public spaces and recreational activities are welcoming and accessible for all individuals irrespective of their abilities.
Another important aspect is to rethink what we consider ‘normal’. By challenging the traditional definition of normal, we can broaden people’s perspectives and encourage them to embrace and celebrate the diversity of abilities in our world.
New research is currently taking place around the world on neurodiversity and why it is as important to human evolution as biodiversity is to nature. Indeed, there is no one-size-fits-all when it comes to being ‘normal’, and every individual, regardless of their abilities, has unique value and contributions to offer.
By sharing our experiences and stories, whether through heartfelt conversations, social-media posts, or participating in local community events, we have the power to make a difference. Together we can pave the way for a world where our children are embraced, understood, and supported for who they are. It may take time and continuous effort on our part, but the rewards are truly remarkable.
SLOW CHANGE
Every person’s beliefs and views are shaped by a blend of their inner thoughts, societal influences, personal experiences, and assumptions about the world. Sometimes, we come across people who struggle to see our special-needs children as complete individuals. It is tough and emotionally draining to deal with such people. But in those moments, it is important to realise that everyone has their own viewpoints and limitations.
Remember, no one will truly understand our journey. People might try, but unless they have walked in our shoes, they cannot feel what we feel. Instead of letting anger or sadness take over, it can be helpful to accept that not everyone will get it or be accepting. Setting boundaries with them can help protect our own feelings.
While we might not change everyone’s mind right away, we can keep advocating for our children in small, meaningful ways. By focusing on those who are open to learning and understanding, we can make a difference, even if it is one person at a time. Every step we take matters, and every effort counts in making the world a better place for our children.
Ali has given me a sense of purpose and ignited a passion within me to advocate for his needs and the needs of others like him. I sincerely hope that we can all unite to create a more inclusive world for individuals with special needs.
WAY FORWARD
The memories of our initial difficult days are still crystal clear in our minds. It is like they are etched into our minds, impossible to forget.
Ali’s birth injury was a turning point of our lives. We had to dig deep and find strength we never knew we had. Our journey has been full of ups and downs, but Hussain and I are grateful every day for the opportunity to parent this extraordinary child. Our love for Ali is only growing stronger with every passing day. We are committed to providing him with the love, support, and opportunities he deserves.
To some people, Ali might seem different, but to us, he is perfect just as he is. Sure, he might not fit into what some consider ‘normal’, but we love the little quirks and joys he brings into our lives. We cherish him deeply, even on the toughest days.
When I had questioned God “why me?” during that challenging time, there was only silence in response. However, today, the answer has become clear. It wasn’t about questioning fate; it was a demonstration of trust. The Higher Power entrusted us with a profound responsibility – to give our very best to Ali and to empower families like ours.
Life’s intricate tapestry often unfolds with purpose, and perhaps the challenges we face are opportunities to make a difference, not just for ourselves but for those who journey alongside us.
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