Danny’s Diagnosis: Abstract impressions of an unknown world

 

Oh Danny Boy…

Danny’s diagnosis is still very abstract to me.

“Okay, but when’s he going to talk?” “What does this all mean?”

How do you come to terms with something you don’t want to believe? It’s hard to wrap my mind around something I don’t completely understand.

“Sure, he’s delayed, but that doesn’t mean anything. Lots of kids are delayed. Plus, as a matter of fact, he couldn’t really hear for about eight or nine months, so surely that means he’s going to be fine and all this hogwash is just a load of shit.”

This isn’t something I thought would happen in my life. I’d never entertained something like this in my mind. This kind of thing happens to other people. It sounds so short-sighted and not all that introspective, but it’s not exactly the kind of thing you dwell on with your partner as you’re putting the nursery back together.

We thought he was deaf initially. We had the hearing tests done, as well as the examinations from the ENT doctors and specialists, in which all came back normal. We had them re-run the tests and examinations, with no change.

Early on, things didn’t add up – the funny noises and the babbling. The screaming at almost nothing and for no reason.

The funny noises and the babbling. The screaming at almost nothing and for no reason. The panic and horrified tears when a group sings “Happy Birthday” at his parties or his sibling’s parties. The lack of eye contact. Something isn’t adding up. I had thought out loud the possibility of this being the case, but my wife and I agreed he was simply stubborn and would talk when he was good and ready to.

The doctors start explaining things after the evaluations and months of speech therapy, and handlers in and out. Speech therapists and behavioral therapists and every specialist you can imagine. Are the trained professionals wrong… or am I?

I blamed myself for a long time after Danny’s initial diagnosis. What had I done to bring these limitations onto my son? What kind of cosmic karma was the universe dishing? Was there something about my molecular structure that made his brain work like this? What did I do to make him like this? I wondered aloud if all parents who experience this scenario have the same thoughts in their minds, or if I was really just that selfish and self-centered that my fate alone had determined Danny would struggle in his life.

There’s really no easy way to accept it. We’d been searching for our answer, trying to figure out why. I’ve long thought that this is our explanation, while my wife disagreed and said she wasn’t convinced. In fact, the entire reason she had the assessment done was to “shut me up about the idea” that this was the answer. We swapped roles after his assessment results, and now I’m struggling with acceptance. I’ve dealt with a lot of emotions working through this: anger, frustration, straight denial, with extremely brief windows of acceptance. I’ve also spent a lot of time debating whether I wanted to share this with the world. My wife and I discussed extensively whether telling people about his diagnosis was a good idea. To be honest, I’m still apprehensive to talk about it publicly. I share my life like an open book, but I’m afraid of people treating him differently if we share this information, or giving us the “poor them” treatment and regard us differently as a whole. He doesn’t need special treatment, and neither do we.

The panic and horrified tears when a group sings “Happy Birthday” at his parties or his sibling’s parties.

I’d like to write this article with rose-colored glasses and pretend that life is a dream on fluffy clouds, but that’s not fair to his journey, and not an accurate representation of reality. We still have a very long way to go with Danny’s progress. Although he’s excelling amazingly at his school, he still can’t completely communicate his needs, so meltdowns are common. He’s extremely adaptable, using his hands to show us or literally moving us to tell us what he wants. He’s adapting to his limitations in communication. It’s immensely frustrating for him to struggle and become overwhelmed with trying to communicate, and it’s immensely sad to watch it unfold. For every excellent day, there are an equal number of difficult days for him.

I worry now that he won’t fit in with his peers, or that he won’t be able to take care of himself long term. What will his life look like? What will happen when I’m gone? Who will help this sweet, misunderstood boy? The reality is that kids who receive this diagnosis aren’t helpless. In fact, most kids now receive the proper resources to lead productive and independent lives. He might be quirky, but who isn’t? The thought of this gives me hope and positivity for his future, whatever it may look like.

I’m determined to unlock his mind, and I will spend the rest of my life trying to find the way in. I’ll never give up.

I don’t want the diagnosis to define him or change people’s perceptions of him. He’s the same sweet little boy he’s always been. I believe his diagnosis will empower him. It will also make us stronger, individually and collectively. He’s the same boy who loves Goldfish more than life itself. He’s the same sweet soul who rubs my earlobes as he drifts to sleep in his bed. He’s the same boy who gets so excited to see me every time I appear in a room, even if I just came out of the bathroom, he screams his version of “Dada!” at the highest decibel he can reach. We’ll still share marshmallow treats, we’ll still watch Star Wars, and we’ll still play peek-a-boo from his new favorite box. We just know what’s going on now and have a baseline on how to help him overcome his limitations. Recently, we’ve had great success with music, and he’s been retaining and repeating his letters and numbers. He sings his favorite songs and dances the majority of the day. I’m determined to unlock his mind, and I will spend the rest of my life trying to find the way in. I’ll never give up.

As a writer and photographer, I know I’ll spend hours documenting this experience and making notes about this journey with Danny. I’m still working through processing this. He’s my hero already, and he doesn’t even know it yet. My sweet sunshine boy will do truly remarkable things in his life. I guarantee you that nothing, not even autism, will stop him.

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