Shattered Beliefs and Grief

For years, I had built a world of beliefs around Asaf thinking I understood his needs and his happiness. Then everything I had convinced myself was true about him shattered and I felt like my entire world crumbled around me. As a mum of a non-verbal, “low-functioning” child, I had built a bubble of truth around him; one that was easier to believe than the reality.

I told myself that Asaf was better off than higher-functioning kids on the spectrum because he seemed so content in his own little world. I thought he was happy there, especially at the hostel. For years I convinced myself he was thriving.

Out of nowhere, the truth came crashing down; and in an instant I realized how wrong I was. Asaf wasn’t happy, he wasn’t content, in fact, he was totally miserable. In one of his first typing sessions he wrote:

It’s hell here, get me out of here.I don’t want to die here.”

Those words hit me like a stake through the heart. How had I not seen this? How could I have been so mistaken?

It felt as if the entire foundation I had built to protect both myself and Asaf had crumbled. The beliefs I had clung to for so long weren’t just misguided, they were completely wrong.

In the face of that truth, I had to confront the painful realization of how much suffering he had silently endured and perhaps how much I had failed to truly see or worse chosen to ignore.

The grief that followed was profound, a deep ache I struggle to put into words. It’s a kind of grief that I now carry with me, knowing that in some form, it will always be a part of my journey.

For so long I had lived in a cocoon of certainty, convincing myself that Asaf was content in his own world, sheltered from the things I feared. I had built a shield around us to avoid facing uncomfortable truths. Upon hearing his words, those painful, heartbreaking words that revealed his unhappiness, instantly shattered that shield. The ground I had been standing on felt like it was no longer solid beneath me.

It was important for me to understand why Asaf was so unhappy — what were his fears? My frustration grew with each passing day, reaching a point where it felt overwhelming. I was desperate for answers, but I had to wait an entire week until his next typing session. I couldn’t stand the uncertainty, so I begged his therapist to find time for an extra session. Sixty minutes of communication in a week felt unbearable inadequate. Those minutes were precious, so much could be shared in such a small window of time, but it was never enough.

When Asaf wasn’t typing with his therapist he remained trapped in silence, unable to express what he was going through. I couldn’t help but wonder: How could he live like this? And how could I?

The reality hit me hard: Asaf had only a brief opportunity each week to communicate his needs and feelings; and the rest of his time was spent in silence, misunderstood and unseen. It became clear to me that if I wanted to move forward with any sense of peace, I needed to stop dwelling on the “what if’s” and focus on the present. I had to accept the situation for what it was — limited opportunities, yes, but real progress was possible if I made the most of them. I knew that together we could make a difference, not only in his life but in the lives of other non-verbal individuals.

When I asked him what was so terrible at the hostel, his reply was :

“They think we are retarded because we don’t speak and we don’t think.”

His response left me speechless. Those words hit me harder than anything else he had previously said. It was heartbreaking to realize that the very people responsible for his care , people who were supposed to nurture him, were seeing him through such a damaging and narrow lens. How could someone so capable, so intelligent, be reduced to this misunderstanding? How could they not see him for who he truly is?

The truth was that the carers, who I know take great physical care of Asaf, had been working with non-verbal individuals for years, so their beliefs and assumptions were deeply ingrained. They were influenced by their own preconceptions and those biases are difficult to shed.

I couldn’t help but wonder: How do you change the mindset of people who have already made up their minds about who someone is, simply because they don’t communicate in a way that’s immediately understandable to them?

The management of the hostel understood this problem well. They knew that these biases were a major hurdle, and they were working tirelessly to educate the carers; to show them that just because someone doesn’t speak doesn’t mean they don’t think or feel. It wasn’t an easy task, in fact it was a nearly impossible one. It’s so deeply rooted in society’s attitudes and changing those attitudes takes more than just education — it requires empathy, patience and a complete shift in perspective.

As a mother I felt the urgency of it all. Asaf deserved to be seen, heard and understood in a way that went beyond the limitations of speech. How do you move forward ? How do you take this raw, painful reality and create a future where Asaf and others like him are truly respected for who they are?

I tell Asaf often that his purpose here is to help make that change happen, that he is part of something much bigger than himself. I have total trust in him and in the work we can do together. It likely will not happen overnight, but I know that with every word he types, with every time he opens his heart, we are moving closer to a world where people like him are not just seen but truly understood.

It’s a journey that demands relentless advocacy, not just for our children, but for anyone who is silenced by misunderstanding. And for my son Asaf, I will continue to advocate, to help him find his voice and help the world hear it in a way that matters. Together, we will make this happen.