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.

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.   

Cracking The Bubulubu Code

Today turned out to be an awesome day. I needed an awesome day. I felt like I hit the wall a bit yesterday. I was feeling like I didn't have a place to plant my feet with this whole diagnosis stuff. I have been offered emails and phone numbers of mothers with children diagnosed with autism, much older children. I don't want to know about anyone else's road traveled. Everything I read says that the journey ahead is going to be very unique. I met a mom with a three-year old diagnosed with autism. I loved talking to her. I felt like we were on the same chapter. We had different interpretations of the chapter but I didn't have to deal with spoiler alerts from parents that have 'been there.' I may sound bratty right now, but I don't want to know about how they know exactly what I'm going through because they qualify it with telling me how hard the road ahead is. I don't want to be prepped for the road ahead with stories of struggle. I met a woman that was very sweet and compassionate but scared the crap out of me. She has a child with an undiagnosed severe developmental disorder. The first thing out of  her mouth "Can she self-feed?" She goes on to tell me about all the services that are available to my 'special needs' child. And then she gives me some advice "Focus on your marriage. The divorce rate for children with special needs is very high." Okay, thank you. While this is a very good piece of advice I didn't want to hear it right now. This very sweet woman is coping with her own unique experience and I appreciate the advice but I didn't need to hear about divorce rates right now.

It reminds me of a quote from one of my favorite writers- David Sedaris. It was a short story about his mother's cancer battle and passing. He was tired of everyone trying to help him prepare for her death. He writes, "you can't prepare for famine, if you have never known hunger." He goes on to write that it is better to eat up and savor every bite. That is how I feel about the road ahead. Thank God I am not having to cope with something as serious as cancer but I am tired of well-meaning (very sweet) people trying to prepare me for what is ahead. I don't know what is ahead. And it isn't helping hearing about their struggles. Their struggles scare me and make me question if I am tough enough for the road they think I am on. I hope I am not coming off as ungrateful. Like I mentioned earlier, I hit the wall-which is why I needed today.

Sofie and I had a PJs day. I was tired of holiday errands and decided we just needed to play. The cold rainy day helped seal the decision. I spotted Sofie while she bounced on her trampoline for about a half hour AND she actually went down easy for her nap. VICTORY! I tried to begin some of Sofie's homework from the speech therapist-that didn't go as easy. I am starting a game with Sofie where instead of Sofie doing the sign for 'more' or pointing, she has to knock on my closed hand to reveal the object she wants. So far she gets really mad when I do it. But I try to remind myself that is how she felt about pointing at first. The game is supposed to lay the groundwork for the give-and-take of conversation. It's cause and effect. The therapist said anticipation is a big part of the puzzle. She gave me some hints on how to create moments of anticipation with Sofie. This idea of anticipation took this afternoon's playtime to the next level and officially made my day awesome.

For the thousandth time I started stacking blocks. And for the thousandth time Sofie quickly swatted the blocks away. I then remembered that the therapist said some kids will stack other objects. I had tried stacking random toys but I hadn't tried stacking books. So I began stacking books. "Mommy puts the book ON TOP..." Sofie didn't swat the books away but she didn't come over to me either. I wasn't very interesting, I guess. And then it dawned on me-anticipation. I have been performing this block routine for Sofie a thousand times but I never brought her into the performance. If you are watching a play you don't hop up on stage and join in. I thought I was acting out the task I wanted her to perform but she was just seeing a boring show. We tried forever with pointing in a similar failed effort. We performed 'pointing' countless times and it didn't mean anything to her. So I took the therapist's lesson to heart. I took the books and gave it another go but this time I added the important element of anticipation. "I'm going to put the book onnnnnnnnnnnnnnnnnnnnnnnn top. Mommy is going to put the book onnnnnnnnnnnnnnnnnnnn...." And I saw Sofie give me this big smile while she looked at the book hovering above the table. She knew I needed her. She ran over and pushed her hand on top of the book telling me to put it on the table. "....Top! Yay Sofie!" We did this a few more times before she lost interest. This was huge! She did something similar when she began putting toys in her toy chest. I hope that means we have cracked the code on stacking! I got ambitious and switched to legos. I was fully prepared for this to fall flat but she went with it! I said "onnnnn...." and she pushed her little fingers on top of the block to attach it to the lego base. I was so happy. This made my week! The lows suck but these little victories reinvigorate me instantly.

After the blocks we just kept playing and being silly. I took a little cup and asked Sofie to put her pacifier in it. I helped her the first time and then she did it on her own from then on. She was a little Bubu possessed after that; she started taking all her toys and tried shoving them into this little plastic cup. It was so funny. We can work on spatial relations another day. Today was just wonderful and it didn't start out that way-that's a wonderful lesson. This afternoon was filled with giggles, laughing and rolling around on the floor. We have already come so far from where we were a month ago. Usually at this time of day Sofie was off in her magical world. But now she was running around playing with me. And with all the silliness Sofie found time to do her new job. She has the thankless job of throwing her toys over the half-wall that separates her playroom and the living room. She throws them back and forth. Object permanence has been a bit of question mark for us. I laugh thinking of her throwing her Abby doll over into oblivion and then coming around the wall saying "Are you kidding me? They have an Abby in here too? Oh well, let me make this one disappear too. Back to the playroom...Wait! Are you kidding me? Another Abby!?"

Today was great. I needed it. I'm going to go to sleep happy. Tomorrow is more therapy. Live. Love. Repeat.

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.   

Bubu Babbles!

Tonight our little Bubu did some great babbling after her bath. She is making some great sounds. We feel like she is SO close to saying a word. So close! I want to squeeze the words out of her. I know they are in there!

The longest week ever

Tomorrow it will be a week since we found out how unique our little girl is. Ozzy said "I have aged ten years but that could be a good thing." We both feel like we have matured a lot in a short period of time. We always said our Bubu made us better people and this week really revealed that. I never thought that I would be able to handle something like this. But now that I am living "this" it doesn't seem very dark at all. Our Bubu is a healthy little girl that is teaching us a lot about focussing on life's little victories. Things are getting very real now. Today we began receiving bios for possible therapists for our Bubu. And our pediatrician referred us to a pediatric neurologist; we will meet with them after Thanksgiving. Again, things are getting very real. We have so much hope for our little girl. We have felt very positive but I am anxious about starting therapy. We don't want anyone looking at our Bubu like she is sick, because she is not. I hope that we find a medical support team that understands that. Our case worker is very sweet and empathetic so there must be more people out there like her.

And while the road ahead is an absolute mystery, I know that our Bubu is strong enough to walk it. She is an amazing little person with a very sweet spirit. I didn't think it was possible but I love her more deeply now than I did a week ago. And she is doing so well with the new diet. I am happy to say that she had a better appetite today and seemed a lot happier. We had some great stretches of meaningful eye contact. And in a moment that Ozzy and I are completely dumbfounded by and quite frankly a bit confused by, while holding Bubu she took my glasses and I took them back and she looked me in the eye and said the tiniest "no." Ozzy wasn't looking and thought I was doing a baby voice. I don't know how to explain it, it didn't sound like her. Bubu has always held on to her sounds a bit. She doesn't project very much. We have always said that she is a "whiner not a crier." That is what made that tiny "no" stop us in our tracks-she projected it OUT. It was said softly but she wasn't holding on to it in the back of her throat. I hope and pray that means something, I really do.