Defining Sofie

Today was not a wonderful day. Sofie has had a cold all week and since she is mommy's little shark she has been in a crabby mood. That girl loves to move and go out and about. We have some serious cabin fever. And today she had two therapy appointments. Two therapy appointments that illustrated perfectly two of the three schools of thought I have seen with an Autism diagnosis.

First school of thought is to treat the symptoms and ignore the labels. I like that way of thinking. We are lucky that our established therapists are students of that school. From a practical standpoint, I like focusing on TODAY. I like the little goals. It makes it so much easier to just live life and be happy. It keeps us grounded and focused on how lucky we are. Life is good. We are able to just enjoy our family and not try to map out the next ten years of Sofie's life.

Second school of thought is to embrace the label and let it 'empower' you because you somehow have a crystal ball with this diagnosis. I have observed that professionals that follow this line of thinking are eager to 'help' you by mentioning things to think about. And out comes the crystal ball, they tell me about how Sofie will adjust to school, and the many opportunities kids "like her" have in life. A potential new edition to our therapy team seems to carry a crystal ball and a medical dictionary. I felt like she wasn't seeing Sofie. The therapist was VERY qualified and very kind. I just felt like she was seeing the diagnosis and not the symptoms, if that makes any sense. And I felt the diagnosis was blinding her to Sofie's strong personality. I felt like saying "she isn't paying attention to you not because she can't, she won't because she is annoyed you are coming on so strong." Again, I'm not vilifying professionals that have this brand of bedside manner. I just wish I could say to all the crystal ball medical psychics, "Can you please just LOOK at my kid? I mean REALLY look and maybe listen to what I'm saying too." I know they care (why else would they be in that field) but it gets frustrating.

The third school is the one I see most often in the doctor's office. That school says that we should "wait and see" or "give her time." I am asked to trust the 'gut' of the doctor (based on nothing). I am told that I should wait until Sofie is two or three to intervene with therapy. I am told overreacting and doing too much therapy will be harmful. You might have guessed, I hate this school of thought. Again, I know they mean well but COME ON!

So where does that leave us? Well, like I mentioned earlier I am eager to focus on symptoms. I think it is the only sane option. The thing that confuses me is how I am supposed to feel about the word "autism." I have been told that we should keep the diagnosis to ourselves because it will change how they treat Sofie. I have been told that I should embrace the diagnosis and prepare myself for special schools and work placement programs. I have been given a long list of possible limitations with Autism and then quickly reminded that it is "different, not less than" Hmmmm well it seems like they are building a case for "less than." So again where does that leave us? How do we move forward with this word 'autism'?

A former co-worker with a son diagnosed with autism said to me in a sweet email that "if you know one child with autism, you know one child with autism." That makes so much sense to me. It's true. The reason Sofie has confused her pediatrician and neurologist is that she is unique. She doesn't fit some preconceived notion of what Autism should look like. She is far too complex for some checklist. Why am I happy or sad based on how many stupid checkmarks Sofie gets on some riddiculous development test? And let me add it is a development test that I have the joy of hearing from one professional after another that there is something 'biased' or wrong about it. It seems so simple writing it-why let the tests dictate our happiness? And yet some days the checkmarks (or lack thereof, depending on the test) get me down. The new potential therapist gave her assessment results today-not a feel good. But I chalked it up to her chaotic testing style. In short, she pissed Sofie off and Sofie had no interest in being her dancing monkey. When I think of it like that I don't have a developmentally delayed toddler, I have a little girl that doesn't like being pushed around and won't engage with anyone who tries to. That sounds much better.

Maybe this is all semantics- autism, autistic, challenged, delayed...blah blah blah. If that's the case, then I will never hide Sofie's diagnosis based on fear of that word. Sure, Sofie has been diagnosed with Autism-no secrecy. But I will work hard for it not to define her either. I don't want to give people an easy way to summarize who they think my kid is. She is far too complex for that. My sister  came up with an awesome line for our team tshirt for the Autism walk in April. "One of a kind in a million and one ways." I love that. I took it one step further and made it the defintion of a Bubulubu. That's a word I don't mind calling Sofie a dozen times a day. It's a cute little pet name but it sprung out of my love for her. Ozzy and I didn't assign it to her. The pet name fit because she is too sweet, like her Mexican candybar namesake. And the very name is silly and nonsensical. I say the phrase "Sofie is such a bubulubu" and I immediately think of a few dozen adorable things about Sofie. I can see her sassy smile and I am reminded of a bunch of times she made me laugh uncontrollably. If I say the phrase, "Sofie has autism" it seems out of place and void of any whimsy or any other magical part of Sofie. I don't see ONE part of what makes Sofie, Sofie. Using that logic, the label of Autism is for doctors and insurance companies not for anyone that really knows Sofie. I think Bubulubu fits much better. BUT I think I will refrain from telling the little gym director "Sorry my daughter licked your window, she is a Bubulubu." :)