I’ve decided to be open with you all about this journey, but I needed a night (and probably more!) to process it all.
So as many of you are aware, we had our diagnostic appointment yesterday for S. I was anxious and uneasy, Sean was calm and collected– it would’ve been a normal day for us, except that it wasn’t.
We came into the appointment with the knowledge that we would likely leave with an autism diagnosis, and we did. You’d think that knowing ahead of time what was coming would soften the blow, but I’ve come to conclusion that I am not the kind of human that likes to see the punches coming.
We sat down with the doctor and gave him the rundown so far of our experiences with S. He asked a lot of questions, watched Scarlett interact with us/toys as best as he could, and said that we were looking at autism with a major emphasis on sensory and speech difficulties.
Thankfully, that wasn’t the end of the appointment. He told us that if we continue the therapy we are currently doing and add quite a bit more, he’s optimistic that Scarlett will be able to function pretty normally, and hopefully in time, be able to “drop” the autism diagnosis.
Before the autism community comes at me with fists flying, allow me to explain. I know that there is no such thing as a “cure” for autism. What the doctor meant by dropping the diagnosis is that he is optimistic that with an increase of therapy in both frequency and intensity, Scarlett may be able to function so normally in society that we may not even feel the need to disclose that she is autistic. That said, she is obviously she’s still quite young, so we really have no way of knowing quite yet where exactly she lies on the spectrum, just that she’s on it.
Anyone that knows me well knows that I am a wimp. I am scared of everything, friends. Scared of spiders, moths, the dark, water where I can’t see my feet– I am a total scaredy-cat. But friends, this fear– the fear of not knowing if your child will be bullied, not accepted, not “normal”, alone– this is a level of fear I have never felt before. As much as I wish it were not the case, people are often unkind to those who are different, that’s just how the world works. My daughter could grow up to be the most brilliant, kind, loving human on the planet, but if she can not learn to control her need to walk in circles or overcome her inability to speak at the level of her peers, it is unlikely she will ever pass as “normal”. As a parent, that is terrifying. That unknown is terrifying.
But again, her doctor was very optimistic of her prognosis, with the caveat that she continues and ramps up her therapy. I am clinging to that optimism, because for now, the tunnel seems long and oh-so dark.
All that said:
My girl is smart. She is funny. She is sweet. She is loving. She is fierce. She is stubborn. She is everything I dreamed she would be and so much more. When I was pregnant with her, they asked if we wanted to have genetic testing done to check for defects in case we may want to terminate the pregnancy. Sean and I refused them because we knew that no matter what, we would love this child. And we do, so fiercely. She was designed beautifully, and I am so thankful to have her. She has already taught me so many things about myself and the world around me, and though this road has been difficult and overwhelmingly painful at times, I am so glad to be on it with her.