By: Anshu Kapoor

Sophia (left) and her sister Saisha (right) as children

Since the lockdown has kept us all at home for the past few weeks, we decided to watch our twin girls' baby videos this past weekend. Saisha will be going to college this year, and it seemed like a good family weekend activity. In retrospect, maybe it wasn’t such a good idea after all. It unsettled me and broke my heart, reminding me of everything I had tucked away over the years. Grief comes in different forms, including the loss of what could have been.

I saw Sophia’s face become so sad after watching the videos. She was grieving, too. She was seeing herself and her twin together, so connected - and then so far apart. It brought back all of the suppressed emotions and feelings we shared as a family. I hadn’t realized until I put on the DVD that the last time we saw these videos was in 2004, an irreversible turning point for our family.

I will never forget August 5th, 2004 ... the day we finally got the diagnosis which confirmed my innermost fear and the feelings I had been guarding within myself for the last few months. I could clearly see something had changed. Sophia was behaving differently from her twin. At age 2, the child I was so connected to seemed to be getting more and more withdrawn, lost in her own little world.

I’d suspected she had Autism for a while, but the idea was almost always dismissed by anyone I would bring it up to. But a mother’s heart just knows. We started on the Autism journey as soon as we received the diagnosis, aggressively pursuing different therapies - Applied Behavior Analysis; Cranio-Sacral Therapy; Biomedical Intervention; Hyperbaric Oxygen Treatments; explored Stem Cell Treatment, and so much more all over the United States and other parts of the world. Our lives changed overnight. There were changes in routines, relationships, expectations. We were so sad and so angry - but it was important to allow ourselves to feel that pain before we turned into the forever Autism super family we had to become.

Sophia (bottom right), her sister Saisha (bottom left), and her parents

Autism parents need to hold it together (mostly) - and cannot be broken (at least not completely). All we imagined and prayed for was for our daughter to express herself functionally and to hear her voice, to somehow get her to participate and learn daily living skills. For things to get “normal.” But what is normal? The term is so relative! The secret world of Autism is heartbreaking, funny, stressful, and at the same time full of love and hope.

As parents of a daughter with autism, we spend a lot of time attempting to put the feelings in our hearts into words. Communicating our emotions to others has never been easy, although the reminders of our differences are there and apparent everyday. When I hear people joke about kids talking too much or having playdates together, it just breaks my heart for Sophia’s sister Saisha. Just two minutes older than Sophia, her childhood didn’t include the typical toys, laughter, and playing with other kids. We were so busy being caregivers to Sophia, we just expected Saisha to assume responsibility for herself. She missed out on a carefree, relaxed childhood and on cherished moments of shared adventures and memories while growing up. She didn’t have the usual ways to alleviate her loneliness.

Autism creates tremendous stress on families and on individuals. Life never remains the same. We try to do the best we possibly can for our children, but we always have uneasiness and angst in the back of our minds. We smile but are never completely happy. There is always guilt. It feels like we are teetering on a tightrope, doing a balancing act of trying not to be sad, but not being happy either. You can’t help but question how it would have turned out if perhaps we had done this or that - the self-doubt is constant. And we wonder about the loss of regular, relaxed family life as it “should” have been. It’s not something we can explain easily to our friends or extended family.

After several public and private schools and countless therapies, we decided to homeschool Sophia. While researching every educational resource we could find for her, we stumbled upon a technique called Rapid Prompting Method, or RPM. To our joy and our shock, it worked. This method uses a Letter Board to spell and communicate. RPM has been a lifesaver - and a lifeline - for Sophia. We were speechless when we found out that the child who we thought didn’t have a voice in fact has a strong and honest one. She may not speak in the conventional sense but she comprehends everything. Our hearts were overflowing with gratitude and happiness. I was in wonder seeing RPM in action. The technique aids in communication for people with autism by having them type, spell, or write using an alphabetical template.

Sophia was able to explain so much to us using RPM - she could distinguish right from wrong, and she could express her fears and anxieties. It was a moment of absolute wonder when she shared her favorite song with us - “The Story of my Life.” I heard the words and wept as I realized how she had been hurting inside.

We finally saw light at the end of the tunnel. She was like a dormant volcano that had erupted, and there was so much to be shared. She had found a medium to communicate. We had waited fifteen years to get to know this family member, and we discovered so much about her; she loves wearing dresses and jeans, loves pizza and Thai food, and she has a big crush on Harry Styles. She picks up on the energy around her, the attitudes of other people. It is humbling and emotional. There were so many breakthrough moments and days after this breakthrough. We discovered a gifted young lady who had a built-in camera in her brain that absorbs everything she sees and is exposed to. She has overcome so many obstacles and we are just in awe.

This experience has removed every misconception people have about how a differently-abled child can comprehend and learn. Sophia is a motivating force against every limiting stereotype about autism. RPM hasn’t removed the autistic behaviors, and the severe anxiety has actually increased as she has grown older - Sophia’s autism is still very prevalent and she hasn’t transitioned to what is considered normal behavior. The challenges go on, and yet this has been an enlightening path for us. Hope is such a strong word, and RPM has been our saving grace. It is a surprisingly simple methodology, but it enables her to communicate. It has taught us to broaden our horizons and look at the whole world out there. One needs to keep an open mind and think out of the box.

The author and her daughter, Sophia using RPM to have a conversation

This has not been an easy path for us, but we wouldn’t change a thing. There is no right or wrong in this situation. This is how our life is, and we’ve never known anything else - it’s just the life we know and love. As time goes by, and with this new found energy, we want to seize every moment and give Sophia the opportunities she never had before. We discovered some harsh truths as well, such as how sad and isolated and lonely she often feels. How her spirit feels trapped, and how she would love to break free from the label of Autism. To be able to speak and sing is a dream of hers. She wishes she could be like her twin sister who will be going to college this fall - to meet people, chase opportunities, and explore all of the possibilities that life offers.

Twins have a special bond and it is sad to see them so far apart, especially at symbolic milestones. We always encourage Sophia to follow her path - her journey may be different from her sister’s, but it is every bit as special.

Sophia has taught us so much through her journey. There is not a trace of malice or negativity in this girl, and she has taught us to be better human beings and to focus on what truly matters. The hard stuff still remains, but the communication breakthrough we have experienced through Letter Boarding has been transformative and has changed our lives forever. We went from not knowing if she ever understood anything at all to discovering a deeply thoughtful, mature, insightful, and sensitive young lady. We have ‘heard’ her voice and heart in unique ways through her poetry, which explores her fears about the future, the many unknowns, and the open-ended questions that remain - and yet Sophia is a daily reminder to surrender to life’s ups and downs. She has her moments or days of immense anxiety and self-doubt, but she is part of an online book club and poetry class with several peers who use the letter board to communicate and to feel connected and be part of a community. Recently she wanted to travel back to Florence, Italy, where she lived as a toddler, and she expressed a strong desire to see Bottcelli’s “The Birth of Venus” at the Uffizi Gallery. So, we made a family trip after almost seven years to enjoy that priceless experience.

We have learned to allow our minds to accept the situation. Not knowing what will happen - but just feeling in our hearts that somehow things will work out. Sophia has taught us unconditional love and a truly Zen way of living in the moment. The core of our being was altered but not shifted by our circumstances. It remains as steady as the Moon, which disappears when it goes behind a cloud, but is only temporarily out of sight. Our core remains strong when things around us are falling apart. The more we learn to surrender, the more courageous we become.

Sophia is now 17. She is and always has been essentially non-speaking for her entire life. Autism took her speaking voice - but her inner voice is beautiful and insightful. During the COVID-19 pandemic, when the world seems to have come to a standstill and the future is uncertain, Sophia puts it all into perspective. She heals us through her poetry.

My Feelings ….

The unknown monster

Its power immense

It rages and cries out

Time for it to fade away

Hold onto our faith

Humanity is stronger

Oh, courage flow from all

Slay this hidden terror

And welfare prevail

My fearful mind

Do calm down

This will soon be gone..

- Poem by Sophia Kapoor

The views, thoughts, and opinions expressed in this article belong solely to the author, and do not necessarily reflect the position of The Fem Word organization. Any content provided by our authors are of their opinion and is not intended to malign any religion, ethnic group, club, organization, company, individual or anyone or anything.

Sophia's World: Journey of an Autism Super Family