Monday, June 30, 2014

The More She Says the More I Understand Why She Thinks Talking is Overrated

I have a "pinch me" feeling with Sofie's progress lately. We absolutely have our textbook ASD trials and obstacles. Some days are more trying than others. But she is really starting to connect with this peculiar and foreign idea of "talking to people." We have had so much help along this crazy journey from family, friends, our amazing therapy team, teachers-the list goes on and on. Our newest breakthrough seems to have come from our speech therapist. She suggested that instead of holding out for a word or phrase we should give her other chances to succeed when she feels tongue-tied. So we started requesting that Sofie at least make an "ahhh" noise accompanied by eye-contact. She has really responded so well to this. It really built up her confidence and reduced her frustrations. And that confidence has exploded with a tidal wave of talking (well a tidal wave for our quiet girl). The talking really began to snowball around our Poconos trip in June. She is labeling things she sees as soon as she sees them (instead of the delayed response she would usually give). She is becoming increasingly tickled by how quickly she can get something by "using her words." I have never seen someone so proud to say "mmmmmillllkkk!"

And with this joy comes some skepticism. Perhaps it has always been there but Sofie is getting more comfortable letting us know how silly she thinks some of our world's social constructs are. Sofie has (I think) mild Autism and often we find ourselves reacting to things as if they were ASD effects but its sometimes just being a three-year old. One of these things is her classic todller self-centered thinking. She goes about her day thinking everyone around her knows EVERYTHING about her. HERE is where the perfect storm between typical toddler behavior and autism behavior forms.

 Me: "Sofie what do you want to watch [on TV]?"

Sofie has opened her PEC Book to Dinosaur Train and stays silent

Me: "Mommy doesn't know what you want." I start naming shows playing dumb.

Sofie: (softly) "Chain" with no eye contact *chain is "train"

Me: "Can you ask mommy for dinosaur train? I love it when Sofie uses her words. Can you say 'please dinosaur train'?

Sofie: looking downward she scoffs "AH Course I YIKE Chain"

Me: "Can you ask mommy for Train? Say 'train please'?"

Sofie: still not looking "BUH course I YIKE Chain! Bud and Tine (Buddy and Tiny are characters on show)! AHH Course!"

This goes on like this for a bit. Sometimes a minute or two sometimes longer with some tantruming but I think the exchange says a lot.

Here is my theory:

I think most three-year olds don't think there is real dire need to communicate their desires to their parents. I think many still assume Mommy and Daddy 'just know' what they want. How many times have you dealt with a screaming toddler that is furious you don't know why they are upset?? BUT a typically developing kid enjoys asking for things. Often they are like a broken record with their questions. There is a pride I see on these kids' faces. They want that connection. They want to talk. In my days and nights with Sofie, I can say she doesn't naturally get that typical toddler high from talking. Sofie communicates through touch. She loves touching those she cares about. She will physically shake with happiness sometimes from these exchanges. She enjoys vocalizing and her discreet babbling talks to her favorite doll "mokey." I think the high from talking hasn't come naturally to Sofie because expressive language can be a real source of anxiety and stress for Sofie. I equate it to how I hear runners talk about the "runner's high" with long distance running outdoors. I have not had any small victories with outdoor running that would make running long distances an attractive prospect for me. It's great for them but it's not for me (i'll stick to the treadmill I visit every 6 months; another Me Activity I need to return to). But sweet Sofie doesn't have the option of saying "Sorry guys, talking is tough. I really don't get the point of it. I'm fine with that."

And that's the thing. SHE is fine with it. Her frustrations come when she is in a situation in our black and white world that requires her to talk. THANK GOD receptively she is so "here." But that comes with a unique challenge because it has given her the gift of being a thoughtful and quiet observer. She gets to experience the world and take in the lessons around her. BUT she has no natural need to ever share those lessons because she doesn't really 'get' the incentive to share it. She has created this self-sustaining happy universe for herself. Well, rather it's self-sustaining according to Sofie. A toddler lives in the "now." It is insane to expect a 3-yr old to think about "the future" and how their actions will affect it. And yet sometimes I think I do expect her to see the big picture. That looks insane as I type it. But if I am honest yes, I think I sometimes push this agenda of talking without explaining why. I am working on that though. I really try to remind myself that WE want her to talk and WE know why she needs to but Sofie is happy today. It's a hard sell.

So thank God, she is starting to see why talking to people can be a good thing. And I think she is getting that we aren't trying to take away her twirling way of life. I know I am projecting a bit there but whatever. All I know is that my heart swells every time she talks. And I REALLY hope that her heart is swelling with pride too.

Monday, June 23, 2014

Love the Adventure

 We celebrated our five-year wedding anniversary this month. We took our little adventurous 3-year old to the Pocono Mountains. We had the best time. It was truly one of the best vacations of my life. And yes, we were lucky enough to have amazing weather. And yes, we were lucky enough to have a wonderful place to stay. These things alone would have made it a wonderful and memorable trip. But we had the added bonus of having every experience heightened knowing that we were living out a dream. How often can you say that? The day Sofie was diagnosed with ASD I couldn't see trips like this-they were for other families. And no it wasn't the label that made me feel this way. I knew my little girl's struggles and it made the dream of a happy spontaneous vacation, just that- a dream. We have gone on vacations since the diagnosis and they have been amazing. But this trip to the Poconos came with some potential roadblocks that not so long ago seemed like giant brick walls. Some of those roadblocks were the long car ride, the fluidity of our plans each day, keeping her safe holding our hand (easy to forget she used to hate that), giving her freedom to run (didn't always 'get' "stop"), being out somewhere that is a completely new sensory palette to explore (again, easy to forget EVERYTHING used to go in her mouth).  I'm not saying any of the potentially dangerous lines that are thrown around the blogosphere regarding Autism that would suggest everything is easy or she is pretty much a typcially developing kid thanks to therapy and diet changes. She is not. A fact I am reminded of anytime I meet a "typically developing kid" her age. What I am saying is that she is a thriving child with Autism. The steps we have taken since beginning our ASD journey have been exhaustive and not all of them proved fruitful. Every kid is different. I think of the time I spent trying out OT brushing, or our time with fish oil and liquid B12-it doesn't always work but you try what is feasible and safe. Going back to our trip, it was truly a celebration of all those steps and the steps my husband and I have taken since the diagnosis. I thought I loved him before we got married but the depth of love you feel when you know that you have a teammate that is right there with you and has the same vision for your family-it brings that love to a whole other level. And I guess that is what this rambling blog is all about. This crazy journey we are on has made us feel everything on another level. Of course we get bogged down by the trivial from time to time but we smile every time Sofie runs to get something we asked her to. We tear up sometimes when she constructs a simple sentence. We fight back happy tears when she puts her arms around us for a picture (pictured below, a first!). And she has given us the gift of keeping the volume down, so to speak. When we were at Bushkill Waterfall we heard quite a few parents getting mad a their kids for messing up their shoes with their puddle jumping. We didn't see the big deal. So we told Sofie she could "gently" step in each puddle she saw. And she followed THOSE directions quite well. And this isn't a reflection on how amazing we are. This is a reflection on what our daughter has taught us. They are just shoes. Experiencing all "this" is more important than clean shoes. We were talking while we were walking in the woods by the Falls and my husband was telling a story and the phrase "why are we here?" was uttered. Sofie zeroed in on that question and babbled "wah we ear? be oppy!" Let me translate: "Why we here? Be happy." And THAT is what made this one of the best vacations of my life. We have an amazing teacher.
Kettle Creek Aviary Research Center

Summer is Here and the story continues to evolve and move forward

Has it really been over a month since my last post?!?

I have been short on words lately. SO much is going on and I am struggling to process it all. The emotional highs and lows have been almost comical in how erratic they are. If I wasn't already on Zoloft I would think I have a real problem!! Some days I feel like the worst mother (see countless posts lately as evidence) and on days like today I feel so amazingly lucky and happy to be alive. My issues with anxiety make my brain search for something to be anxious over. Money, my health, my family's health, career paths, the environment ( not kidding, pictures of plastic in the oceans gives me ACUTE anxiety)- no topic is safe from my anxious brain. I sometimes wonder what life would be like if Sofie was "typically developing". I know I would find things to worry about. And I imagine them being pretty trivial (well maybe not all of them). Although to be fair, if I was going down another path those worries wouldn't feel very trivial. I guess what I am saying is that I am working hard to just live my life and not play the game of "who has it harder and who has it easier." I was reading the blog of a mom with a sweet little girl with Progeria (the rare rapid aging disease). I felt small and this blog felt small and petty when reading the obstacles their family is facing. But I guess while perspective is incredibly important to have it is equally important to allow yourself to feel sad and overwhelmed without adding a layer of guilt because "it could be worse."  I know I have an embarrassment of riches in my life but I am allowed to get choked up when a "communication device" is mentioned as a possibility for Sofie "down the road." I am also allowed to bounce off the walls with happiness when we seem to be really taking some huge steps towards Sofie talking with more ease. I am going to blog much more often this summer. I am going to try to make short entries each day. I am going to try to do this because I realize that these gaps in entries allow for a lot of amazing things to go undocumented but it also allows my brain to get filled way past capacity. And I desperately need to do some much delayed spring cleaning for my brain. 
My happy place