What Do You Want Me To Know

Throughout my 24 years of parenting Asaf, I’d never had a conversation with him.Stop and think for a second about what that actually means.How would you interact with your child when they have no way of verbally answering you?

Communication is everything.

Asaf would sometimes communicate his basic needs, dyspraxia allowing, through an app on his iPad he was able to communicate but most of the time it was just a huge guessing game.

Imagine trying to understand your childs needs or desires in the absence of clear communication. It wasn’t just about the big moments like crying or pain; it was the constant, daily questions that felt impossible to answer. Trying to interpret his gestures, expressions, and occasional sounds was a constant challenge.What do you want to eat? Are you enjoying what we’re doing? What would you like to do? Are you comfortable?.?If he’s hitting himself — why is he hitting himself? Is he in pain? Is he hungry? Is he thirsty? Is he frustrated? Is he constipated? Why is he upset?

The most challenging times were when he cried. Asaf’s pain threshold is very high. If he’s crying in pain, it means excruciating pain. There I’d be, totally helpless, trying to understand what he was going through. I’d press on different areas of his body, hoping for a wince or any sign that might guide me. If he had a temperature (fever), I felt fortunate in that it’s a sign of an infection. Otherwise it became just another guessing game. Was it his stomach? His head? His teeth? The anxiety of not knowing was overwhelming, made worse by the gnawing fear that it might be something serious.

Then there was the dreaded question: is this bad enough to warrant a trip to ER? The thought of taking him there was its own nightmare. His poor body would be pricked and jabbed, subjected to endless tests - all because he couldn’t communicate what was wrong. I can’t describe the heartbreak of watching him endure that and still leaving without answers — just more questions.

Trying to interpret his gestures, expressions and the occasional sound was a constant challenge. I’m also ashamed to admit that through all of this, I always assumed he was limited in his ability to truly express what was on his mind. I thought his world was small, his thoughts simple, and his understanding minimal. Not because I wanted to believe it, but because that’s what I was told, what I was conditioned to accept.

With the realization that Asaf could communicate with me, the floodgates opened.

We were about to have our first conversation, and I was overwhelmed by the questions I wanted to ask him.

I had so many questions. We all had so many questions.

We even opened up a family WhatsApp group, titled “Questions We Want to Ask Asaf.” It quickly filled up with everything we’d always wondered.

• What’s your favorite food?

• Do you communicate with your friends in the hostel through telepathy?

• Who’s your favorite sibling?

• What interests you?

• What memories do you have from your childhood?

• What makes you happy and what upsets you the most?

• How many languages do you understand?

• Do you dream in pictures or in words? Are you verbal in your dreams?

• What are your hopes and dreams?

The list was endless.

After days of deliberation, I finally chose the first question I’d ask:

What would you like me to know?

The day of our typing session arrived and I was filled with both excitement and nervousness.This was a huge moment for us, one I had been craving for 24 years: the possibility of finally hearing Asaf’s voice, even if it wasn’t spoken aloud.

After sharing how excited I was to be there with him, I asked, “What would you like me to know?”

His reply: “That I’m smart in my head.”

I was literally blown away.

In that moment, I felt every possible emotion at the highest dosage: shock, astonishment, happiness, and a little later, guilt. Guilt that seemed to always sneak in.

I had absolutely no idea. How could I have missed this? How did I not believe that Asaf knew, felt and understood more than I had realized?

It hit me all at once, the weight of it. For so long, I had assumed there was so much Asaf couldn’t do, but he had always known what was happening around him. He understood so much, and now with this new way of communicating, he was finally able to show me.

I was ecstatic to finally know the truth, yet at the same time, I felt the sting of all those years of assuming he couldn’t communicate his thoughts. The regret, however, was overshadowed by awe and wonder for the person Asaf truly is; the person I was only just beginning to understand more deeply.

This moment, his simple yet profound answer, marked a turning point for me.It shattered so many misconceptions I had about him and opened up a world of possibilities for our relationship.

It was a reminder that sometimes, as parents, we get too caught up in the labels and assumptions we place on our children.Asaf, with his quiet strength and patience, showed me that there’s always so much more beneath the surface.

I felt terrible. His six words echoed in my mind for days. The next time we met, I apologized and asked for his forgiveness for not believing that he was “smart in his head.”From that moment on, the way I interacted with him changed entirely. I began speaking to Asaf as I would to my other kids. Though there was no visible sign that he was absorbing what I said, I made a pact with myself:

Asaf’s voice, in whatever form it may take, will never be ignored again.

That moment, and his words, will stay with me forever.

From that day forward, I always presume competence.