Here and There

It has been too long since my last entry. Maybe in some ways that is a good thing. The reason it has been so long is because other areas of life were occupying my time-things not related to Sofie's diagnosis or even Sofie. "Live. Love. Repeat." This is a marathon and I think it's really healthy to spend some time spinning the other plates in my life. Not to mention thinking about Sofie's therapy techniques 24/7 is exhausting. I can't live and breath it every second of every day. You stop seeing your child if you do that.

Seeing Sofie is VERY important to me and Ozzy (and all who love her). I am still confused or conflicted over the competing schools of thought regarding "labeling" and "testifying." I think I am coming to a solid footing on the topic. I understand where some are coming from when they say "don't tell everyone about her diagnosis. that is all they will see." But at this stage in Sofie's life I don't know if that thinking makes it more about me and less about her. I want to be able to tell Sofie about this time in her life with great pride in her- and us. I never want to have to explain to her that I kept any part of her a secret. I don't think that means me introducing her as "my daughter with Autism." But I will proudly testify how amazing my child is and how hard she works to attach herself to this world. I think of it like if Sofie got an amazing grade on a chemistry exam and someone said to me "wow! Sofie is so bright! That girl can do anything!" Keeping it to myself that she studied hard for a whole week and struggled with balancing equations doesn't make the victory any sweeter. I'm going to share with great pride that my daughter works hard and, yes, can do anything.

Now when Sofie is older the story will change a bit (as it always does). Autism is one part of her identity. And in the same way we all process identity, Sofie will decide how much she wants to share with people. I hope and pray that it is something she can choose to share and not something that is an obvious barrier between her and socializing with people. I really believe in my heart it will be the former. How can you go on this journey and think anything else?

I don't think I am blissfully naive either. Sofie's speech therapist thinks that she has made a lot of progress in a short period of time. The new obstacle in focus is imitation. If we can get Sofie to consistently imitate us then it will open up the door to Sofie catching on quicker with expressive language. I say "quicker" because Sofie is babbling a lot these days and little words are coming out. It's VERY exciting and gives Ozzy and me so much joy. Sofie says "yeah" for an affirmative response and even said "yeahbaybay" for an emphatic affirmative. She also repeats the word "ready" in 'ready, set, go.' And in an awesome moment, Sofie ran over to Ozzy when he came home the other night and said "hey daddy" with a big smile and a lot of eye contact. :) :):)

We have a neurologist appointment next week. I am not holding my breath or scared of what they will say. I have lost a bit of faith in what doctors say. I trust the therapists' opinions more because they actually know my daughter. Sofie doesn't fit any stereotype of Autism and part of me is expecting to hear "your child doesn't have autism" or "oh boy, prepare yourself for surprise scary hypothetical that I can't back-up but I will say anyway." You would think I would be praying for the former but there is no biological test to prove that Sofie doesn't have Autism. The only way to say Sofie isn't on the spectrum is for Sofie's language and socialization to improve. Doctors obsessing over this idea of "does she or doesn't she have autism?" is really doctors focusing on a label. Do they really think it is the label that keeps me up some nights? No, its the symptoms. The last neurologist we saw was happy to say Sofie 'didn't have autism and it was too early to diagnosis' but had no concrete reason Sofie was so delayed in some areas. I honestly don't care about this label. Maybe that is why I am so comfortable saying it these days. It's a name scientists gave a list of symptoms. It is not a tactile thing or person. And the more times you say the more trivial the word feels coming out of your mouth. I am lucky. Other words don't have the same powerlessness when you say them over and over. And my heart goes out to all those who are confronted with THOSE words.

I am not saying I am not scared of the future. I am just getting better about not thinking of it too much. I try to remind myself that if Sofie was a typically developing child I would be psychotic to worry how she would adjust in high school, so why bother? We will get there. Time moves fast enough on its own without me imagining scenarios of Sofie's schooling and teen social life. Pre-school and nursery school scare me sometimes but again I have to keep my thoughts here. And "here" is not a bad place to be these days-plus "here" keeps me very busy with therapy appointments and therapy homework for mommy and daddy. It reminds me of a childhood song on one of my favorite shows, "Fraggle Rock." A character sings that you can never be 'there' you are always 'here.' The character is singing it in a sad tone because he feels stuck but today, for me, that is a comforting song.