About two and a half weeks ago there was a culmination of a few months of wondering/questioning/worrying on both my and Jason’s parts about Louisa. Trust me, we are both playing the “why didn’t we notice/speak up SOONER?” game but that doesn’t do anybody any good. Sure, maybe we should have figured things out a bit earlier but… we’re first-time parents. And nobody wants to believe that there is anything wrong with their kid.
Louisa has always been a little behind with her speech. Had we realized how actually behind she was (which, by the way, those queries at the pediatric well visits don’t really assess that well) we may have had the oh-my-fuck moment months earlier. She started saying single words a little beyond the latest part of the normal range. She progressed at pretty much that same level. Until around age two. She sort of started saying two-word phrases, but what I didn’t realize until just recently is that even those two-word phrases were not what a normal 30-month-old kid should be saying. Like, those two words (and at this point three and four words) should be tiny sentences like “drink water” or “me hungry”, not “be careful” repeated over and over obsessively as she was running up and down the hall. And then she started losing words until she basically wasn’t talking really at all. And then she started doing other concerning things like lining up her toys and spinning around in circles.
The weekend after Christmas the planets aligned or something and both Jason and I were like “are we worried about her? Yes, we’re worried about her”. And so we decided that the next morning I would contact the pediatrician’s office first thing Monday morning. And then that night as I laid in bed with Simon and Jason hung out on the couch, separately but probably at the very same moment, each of us googled something about autism and felt that giant slap in the face that some folks like to call an epiphany.
Good lord. This all fits. How did we not notice THIS and THIS and THAT FOR THE LOVE OF GOD?!
You know what they say about hind sight.
The pediatrician was just as concerned as us. We didn’t even say “autism”. She did. With as practiced a nonchalance as she could muster, but alas her eyes belied the truth of her urgency, she advised us to contact these people but they will take a while to get you in so in the meantime contact these people who can come to your house next week and get started with Early Intervention. If necessary. Ahem.
And so then I entered a phase of anger. And then one of depression. And then I firmly set up camp in everybody’s favorite, denial. Maybe she is just regressing because of Simon and everything that has happened in the last year? Maybe she has PTSD? Maybe she just has anxiety and/or depression? Maybe something is wrong with her hearing? There was much googling. There was much a lot of other stupid, desperate things. There was a lot of things that I don’t need to go into.
And then yesterday the Early Intervention lady came. Annnnd… Louisa’s problem(s) are so much deeper than even we could fathom. She scored below the first percentile (let me repeat that, BELOW THE FIRST PERCENTILE HOLY CRAP) in both expressive and receptive language (we had been under the impression that her receptive language was fine. She understands us! That’s good! Yeah. No she doesn’t), her social/emotional skills and even her cognitive skills. Essentially the only things that are okay are her motor skills. She can run and jump and climb and fuck shit up with the best of them even though she only has one hand, but what she can’t do is respond to her name (because she doesn’t know that she is Louisa, apparently) or call me Mom or understand that she can’t touch a hot stove or run out in the street. What she can’t do is communicate in any way at all. She does’t even point. When she wants something she grabs your hand and pulls you into the general vicinity of said thing and then hopes that you’ll figure it out.
No wonder she is frustrated and throws fits. Fits that we played off as The Terrible Twos. Sigh.
In the span of 15 minutes I went from thinking that everything was fine, it was a tiny hiccup, nothing that couldn’t be fixed to realizing that we can’t FIX Louisa. We don’t need to fix her. She is fine the way she is and is not broken. What we do need to do, however, and what we can do is help her.
Yesterday was just the first step in the process but luckily our pediatrician is smart and sent us to the right people first. Those other folks, the ones who can give us an actual diagnosis, they will take another four to six weeks before they can even get us in. And then once they give us that diagnosis, they would have sent us to Early Intervention anyway. This way, instead of waiting around for a diagnosis, we will already be helping my sweet little daughter navigate this world with her unique set of tools by the time someone says “autism” or “pervasive developmental disorder” or “scary-sounding disability that I hadn’t even thought of”. Because yeah. She qualified for Early Intervention. She is officially a Special Needs Kid. She has a disability.
I feel like everything suddenly makes sense and that the only thing to do now is to go forward. Whatever her shiny new label will be I love her so much. And so does everybody else in her life.