She Will Keep Fighting Hard, And We Will Be There Every Step Of The Way

This was it. 

D-Day. Diagnosis day. We will find out if our daughter was on the spectrum, as we had expected, and what the first of a lifetime of next steps would be.

In the NICU, they warned us to expect some delays -- that everything might come a little bit later than usual but not to worry. By two or three years old, most NICU babies catch up and you can’t tell the difference. Those words and the expectation they held, might be what made yesterday even harder.

Those first few hours and days in the NICU can be some of the hardest. I will never forget that feeling and how hard it was that first day just to find a solid surface to stop the world from spinning. I couldn’t know it then, but my daughter decided to fight hard and fast to leave the NICU behind. A month or two removed from that trauma and it seemed like she would be fine, just coast right along and no one outside our NICU circle and family would really know she had ever been born at 29 weeks. We knew from the NICU that she is a stubborn little ginger and our lives were now lived at her pace. 

So, a few months delay for rolling over, four months late to cruising and six months late to walking didn’t seem like anything because she always hit the mark eventually. Once she did, it was like nothing was ever in her way in the first place. 

Then she wasn’t making much progress on verbal milestones. 

At first, we agreed it might be because she is so focused on the physical stuff, then we thought maybe this is just one of the harder milestones for her to hit but she would get there soon enough. Maybe it was me trying to push a second language too early and quickly, so we scrapped any German spoken in the house. Further milestones slipped, she wasn’t responding to her name or making eye contact with much of anyone. We had seen this before and read about it, that scary A-word crept in to the back of our thoughts and all of the misinformation, fear, and uncertainty surrounding Autism came with it. 

We worked with Help Me Grow at first, did sign language or PECs to try and encourage communication. Then we started speech therapy to enhance those avenues and try to push more sounds or words, have her respond to her name, and make eye contact when she wanted things. As each weekly appointment went by, there was great progress but it felt incremental and there seemed to be as many bad weeks as good. As months turned in to a year, everyone danced around the possibility before the recommendations started coming that we see a developmental pediatrician. 

My cousin had been down this road with his daughter, who was diagnosed with Autism Spectrum Disorder before her 3rd birthday. We had a dinner with them recently and they saw similarities in how their daughter had been and how ours was now. They told us this would be a long road and that we would have to mourn the child we thought they would be and adjust to the needs of the child we have, that it would be a lifelong challenge. 

And so we sat there listening to a team of professionals confirm what we had been fearing and heading towards for nearly a year, our daughter was on the Autism spectrum. 

The aching question in my head was -- Why?

Why had this happened? It had to be something my wife or I had failed at, certainly. 

Had we let her have too much screen time? 

Had we not interacted with her enough after those long days in the office when we had been worn down and just wanted to Netflix and chill?

Had we not read enough books? 

What was it that we had done wrong? What had we done that was not enough? 

I knew it had to be us, because my daughter had done everything we could’ve asked of her. She is the perfect, happy, loving spitfire we always imagined we would have, she just doesn’t talk, but we can read her and can always figure out what she wants. 

It had to be something we had done or failed to do. We couldn’t say it was related to her prematurity anymore ... right? 

I wanted something to point to, something to place blame on so that we could fix it, but I knew it couldn’t be my daughter. 

The world was spinning again but maybe this time it was all in our minds.

I don’t know how this will end up, how long it will be before my daughter says my or my wife’s name but I can take heart in one thing: my daughter is a stubborn little ginger, she is going to fight hard and my wife and I will be there with her every step of the way. 

-written by Tommy Wachhaus