Before Darwin, I’d never spent any considerable time around young children. So once he was born, every day proved to be a new experience, which is still the case. Because of that, I didn’t have a great basis for comparison between him and any other “normal” kid. But once he became slightly more mobile and I started to see him in the context of playing with or near other children, I started to notice differences. Subtle differences maybe, but I saw them. I was told that I was being paranoid, and that he was totally fine.
I also started to feel concerned about his speech development. Lack of speech development, actually. At one point early on I even had Early Intervention come to my apartment to evaluate him. Three women came and spent some time with Darwin, playing, talking, taking notes. At the end it was determined that he was “fine”, and there was no considerable delay in his speech development. I felt relieved to have some official person tell me that, but I couldn’t shake the feelings I was having. I saw the way other kids acted, and how they spoke, and to me it just didn’t match up with what I was seeing from Darwin.
I kept digging and had him evaluated again, somewhere else. This time around they said yes, he does have enough of a speech delay to warrant speech therapy. So, for over six months now I’ve taken him to speech therapy twice a week. Is his speech better than it was? Sure, but the passing of time will do that with or without his speech therapy in my opinion. Is it where it should be? Not even close. And still, speech is only one part of what I see. I’ve asked his doctors and speech therapists if they thought there was any possibility of autism. I searched around a bit and i found some things that matched up enough to give me some concern, so I asked. One by one, every doctor and therapist looked at me and almost chuckled, “Noo, no, not at all.” I even set him up for a specific Autism Evaluation at one point, but I had to cancel the appointment when I was told that his insurance wouldn’t cover it, and it would be $1,500 just for the evaluation. Meanwhile, Darwin is nearly three years old and he has never once asked me “Why?”. It kills me.
I hounded his therapists enough that they gave me a list of people to contact. I hit up some people at C.H.O.P. and filled out a huge stack of forms with all kinds of questions about Darwin and his behavior. This was several months ago, and I still do not have an appointment. They even called us more recently to say that his behaviors are considered a “red flag” and that he would be getting a “full team evaluation”, which is the big mother, all-in kind of evaluation they give to the kids they think need that kind of attention. But still, no appointment. It really is unbelievable that it takes this long. A considerable fraction of his life is passing by while we have to just sit and wait.
I have no idea how all this will play out, but I do know that I’m sort of scared shitless about it. I want this boy to have a normal life, and I want so badly to sit and have a meaningful conversation with him. Every day I look for some sort of change in the right direction. I hope it comes.