Shaking up the daily routine and other experiments

We are embarking on a little experiment inspired by something Sofie's Speech Therapist said. We were playing with a little fishbowl with stuffed fish Sofie had to pull out with Velcro fishing pole. The therapist said she was gently holding onto Sofie's hand "to break the cycle" of putting the fishing pole in her mouth after each time she pulled a fish off of it. The therapist said that it is easy to get into a routine and that Sofie's mouthing of objects can easily become just part of how she does stuff. That observation got me thinking about Sofie's casual rituals. She is not one to obsess about doing a particular act but there are certain activities that work their way into her daily routine. One activity that is proving to be hazardous is Sofie's cha-cha tip-toe move when she gets excited. I have believed for a very long time that Sofie's tip-toe move occurs when she is really happy and is connected to her challenges expressing excitement in a more traditional way (squealing, dancing, etc.). I think Sofie's challenges with expressive language have created unique ways of communicating passionate emotions. When Sofie is VERY angry she scratches the ground or her legs with a very angry grimace. She sometimes squeezes her hands and shakes with toddler-tantrum-rage when she is mad.

As I mentioned earlier, it is Sofie's fits of happiness that are the problem. The other day Sofie got so excited watching a TV show that she did her cha-cha move so fast that she got tangled in her feet and hit her cheek on the entertainment center. Luckily she barely had a scratch but the incident made me wonder how we can curb the cha-cha-ing. I think I am going to try to use the therapist's advice about breaking cycles with Sofie's risque dance moves. So the experiment begins...

Ozzy and I are going to try to gently intervene as much as possible when Sofie is cha-cha-ing. We started delicately running our hands down Sofie's calves to her feet and saying "feet down." Amazingly enough, Sofie puts her feet down when you do this. And she keeps her feet down when you keep your hands on top of them. And even when you pull your hands away, her feet stay planted for a little bit. She returns to cha-cha-ing only when she can't contain her excitement any longer. I am hoping that through some gentle intervention we can help train her brain to express her joy with her mouth. Of course, she is yelling and babbling more these days (thank God) but I am hoping this will help bring things to the next level and perhaps save her from a few bumps and bruises too. The Speech Therapist said Sofie's wonderful progress forces us to up our game and expect more from her. The curse of having such a smart girl :).

Along with working on Sofie's cha-cha-ing I am trying to push sign language more for the same reasons-Sofie's amazing brain. She caught on to saying 'please' after only a week of working on it. I want to introduce the sign "angry" for when Sofie is very upset. MAYBE she will be less destructive if she can say how she is feeling. Who knows, right? Worth a shot. Regardless, we just have to keep building Sofie's vocabulary. Sofie has a pretty natural way with sign language. We are so amazed by her intelligence. What an amazing girl.   

Towers of Babble: Trying to make sense of feeling crazy

I can never sleep the night before Sofie's therapy. I am hoping that gets better over time. Tomorrow is Sofie's second speech therapy session. I have to remind myself that she is still a toddler and that I can't get down when she doesn't stay focused for very long. In sports there is a common explanation for when someone loses or fails to meet expectations:  "they wanted it too much." Is that a real 'thing'? I don't know for sure, of course, but it feels true these days. I can't help but wrap myself up in every therapy session. I sometimes wonder if Sofie picks up on my desperation and decides to check out, so to speak. Is that even possible? Don't get me wrong, therapy is going pretty good. I just wish Sofie was more 'into' the therapy. She isn't incredibly interested yet. I am probably expecting way too much from her, which isn't fair.

But the worst is when I am home alone trying to teach her something from therapy. I must say first that it is by far the BEST feeling in the world when my little Bubu listens. She is pointing now (I'll get into that later)! It is those amazing highs that make the lows seem so comically pathetic. Take today for an example: here I am a grown woman cheerfully saying (over and over), "MOMMY IS GOING TO PUT THE BLOCK ON TOP OF THE OTHER BLOCK. YAY MOMMY. MOMMY IS GOING TO PUT THE BLOCK ON TOP. ON TOP. ON TOP OF THE BLOCK." I say over and over while Sofie is running around the apartment and occasionally stopping by to happily knock over my stack of blocks. Every professional keeps saying that Sofie is a unique thinker so I decide to run with this idea. Undeterred by my destroyed block tower I begin stacking random objects-any toy I can find. Maybe she will be thrown off a bit and not instantly knock it down. Maybe she will begin stacking.  This did not happen. Sofie was just more thorough about her destruction. Instead of simply knocking over the blocks, she was now inspecting the toy rubble for pieces to further dismantle. My lego accents to my tower didn't stand a chance. You would think I would let this go at this point. Maybe I would do some laundry or simply play a new game but I was a woman possessed. I had a stroke of genius, "I'll trick her into stacking blocks. And then she will see what she did and swell with pride and become a stacking machine." It looks idiotic reading that. Oh well, best of intentions right? So I take a clear plastic container and try to entice Sofie into putting the blocks in it. My hope was that Sofie would continue putting blocks in the container and get to see that she was stacking the blocks on top of one another. As you might have guessed, Sofie was completely ignoring her crazy mom at this point. What is that they say about doing the same thing over and over again and expecting different results? Well maybe I am a little crazy. I honestly think it is a requirement for this chapter in our lives. "live. love. repeat." I am looking down at the wristband I created for Team Bubulubu and chuckling a bit. "Repeat" truly sums up my days. I am repeating actions over and over hoping that this time the lesson sticks. Ahh the wonders of parenting. I am willfully driving myself crazy because I am on a mission to have that one moment where she surprises me and stacks a block. It's funny how these tiny milestones make you reevaluate the big picture. Having a child diagnosed with autism spectrum disorder you live for little milestones that 'normally' developing children seem to reach so easily that parents often forget when it occurred.  It is this bizarre gift we have been given. Sofie's unique learning style is forcing us to simplify everything. She is forcing us to pause and break things down into steps we didn't even think of before. And Sofie's uniqueness is making us celebrate things we would have taken for granted otherwise. I know this because there is so much about Sofie that I am embarrassed to say I take for granted every day. I can't remember the exact  day (or even month) that Sofie began running. But I know that I will remember when Sofie started pointing.   

My crazy repetition paid off with pointing. The play therapist gave me some great advice. She said that we need to help explain to Sofie what pointing means. She said it is too abstract for her right now. The therapist suggested I use Sofie's love of mealtime as a teaching opportunity. The goal was (relatively) simple: have Sofie touch things she likes with one finger.  I started at the very next meal after therapy. I held the chicken and said "Sofie, more?" Sofie did the sign for 'more' and expected to be handed the bit of chicken. She was NOT happy when I held on to the chicken and took her hand and had her touch the chicken. I  fought her stubbornness and held her little hand so that she pointed at each piece of chicken.  I was laughing at the absurdity of the scene. Sofie is yelling at me and trying to get my hand off of hers all while I am cheerfully shouting "POINT. POINT. POINT. POINT AT THE YUMMY CHICKEN." By the next day we graduated to her extending her pointer finger with her three fingers and thumb adorably tucked away. Fast learner! She still needed me to prompt her everytime. I had to hold her wrist in order to get her to make the right gesture. As the day wore on I was making Sofie touch anything she wanted with her pointer finger. "Sofie, point point point?" And I would take her hand and say "point. point. point." After only TWO days Sofie didn't need me to hold her arm to prompt her. I would ask her if she wanted what I had in my hands. She would make the sign for more and I would say "point point point." And she would touch her little finger to the object in question. Amazing. After three days, she didn't need me to prompt her everytime. I noticed she was beginning to extend her little hand towards the wanted object -she was pointing! She hasn't done this COMPLETELY independent of me just yet. I am looking forward to when she sees something she wants and starts pointing-no "point. point.point."

My head is swimming. I think I am going to hold on tight to our little pointing victory and try to laugh off the absurdity of block towers. You can't get too upset over blocks right?

Live. Love. Repeat.   

A little victory feels huge

Our little Bubu has never really understood how to express her thoughts outside of crying or that adorable smile. In recent months it was a big deal when Sofie was able to communicate what she wanted. And for the past two months that communication was largely limited to waving her arm at you to go away. "Sofie want water?" *Arm wave and walks away with no eye contact. There was a brief window where my little Bubu said no and shook her head in disagreement. But this was truly a short period of time. The head shaking was replaced by the frustrated arm wave and we couldn't seem to shake her of the new habit. And that is why the little accomplishments of this week feel so immense and exciting.

We had been working with a few baby signs since sometime in September. She hated when I would make the sign for "more." She would yell and wave her arms. She seemed to hate being put on the spot with a dreaded lesson from mommy or daddy. It made teaching her new things very overwhelming. A big part of me thought that I might be doing it wrong. That idea of "it" was pretty expansive for me. It covered a long list of mommy-duties and the fact that my Bubu was so frustrated made me feel like it could be handled better by anyone but me.

The diagnosis refocussed me and Ozzy. Speaking for myself, I could see this wasn't about me. Bubu had a challenge and we need to take steps to help her move past the obstacles and embrace how unique she is. After taking some time to process it, I realize that autism isn't going to define her. She has so much to give this world that I can't imagine putting a limit on her. The reason I often refer to Sofie as "Bubu" in this blog is because of the long nickname we gave her- Bubulubu. It's a candybar in Mexico. It's insanely sweet. Imagine a candy company getting very carried away with trying to squeeze every sweet ingredient into one bar. The result (in my opinion) is a candybar that is just too sweet-and that is our Sofie, too sweet. I like reminding myself of that while I navigate my way through this time. She is still Bubulubu. Nothing has changed about that-we just have the tools to help give her a voice, now that we know what is going on.

One of the many tools we have is possibly the simplest-the diet change. Bubu has been gluten and dairy free for ten days. I know it's a controversial diet but all I can say is my little girl shakes her head "no" in response to a question. She shakes her head no when she is upset with you taking something from her. She didn't "speak" this clearly 11 days ago. A bigger accomplishment is that Sofie is using the sign for "more" correctly. She asks for more food with the gesture. She also uses this gesture when she wants something. It still shocks me when she comes over to me and makes eye contact and then quickly hits her hands together in two quick moves (sign for more). She is beginning to see that she can express herself. This is huge.

This morning Ozzy was leaving and Sofie shook her head no and then tugged on his pants. After pulling on him, she made the sign for more. Ozzy said he had to leave and she shook her head no and repeated the sign for more. She wanted more of daddy. Our Bubulubu is too sweet. We are so lucky.