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.

Check out my PECs

So yesterday I found out that we are going to up our game with Sofie's therapy and begin using picture cards or picture exchange cards (PECs) to help Sofie's frustration and ultimately her language abilities. I was overwhelmed by hearing this. I began crying while talking to the speech therapist about what she thinks is going on with Sofie. Nothing she said scared me. But the fact that she offered no concrete idea of what is going on scared me. 99% of the time I feel like I can do Sofie's therapy requirements but that 1% of the time is a killer. The idea of creating a language on cards for Sofie to speak feels daunting. Luck would have it that I hit the wall the same time my family was coming to help with Sofie so Ozzy and I could go out TWO nights in a row. Aside from the dates, I also got a lot of help during the day. That makes all the difference for a mom on the edge. Today I started taking photos of Sofie's favorite food and we will laminate them and place them on magnets to attach to a board. And with a little luck Sofie will hand me one of those cards to help me know what she wants to eat. And from there we will keep adding more and more cards. After a little rest and some time out as a wife and simply as me, I think I am ready to work on my PECs. 

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.   

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." :)     

Learning to think outside the box

I have wanted to write every night this week but holiday preparations and sleepiness kept me from the keyboard. I keep hitting backspace because my typed words feel too small, too simple for our story. So much is happening each day, where to begin?

Our little Bubulubu is doing amazingly well. We are so proud of her. The new diet is a miracle. Anyone who stumbles on this blog that is looking for answers for their little one, please understand what I mean by miracle. The diet has helped clear the fog that was keeping our little girl so far away from us. Sofie is present for the majority of the day. She is making great eye contact. The time she spends in her "magical little world" is minimal compared to where she was prior to the diet change. But the diet hasn't helped her find the words she lost (at least not yet). She is babbling a bit, which is wonderful... but no words yet. For the tireless researcher (also known as a concerned parent), please understand the GFCF diet is a tool not a cure. We feel really confident that the diet change will make Sofie more receptive to the therapy she is starting.

We have such high hopes for the therapy and that is scary. It is sometimes scary to let yourself daydream about where we will be six months or a year from now. When we got the diagnosis I felt like I finally had footing after months and months of being adrift. I felt like we had something to build a plan around. This past week the doctors have made me feel like I was a fool to march forward with such certainty. I knew there were SO many unknowns but at least we had a name for what was going on: Autism. Now they are throwing out observations that carry a lot of weight for me because they are "professionals". But these professionals seem like they are just making guesses based on how my toddler acts on a particular day. The neurologist thought it was premature to "label" Sofie with autism and thinks she is just doing things on her own time. Great news right? And he follows up this observation with an innocent anecdote to explain Sofie's severe language delay. He says he had patient who was diagnosed with autism and after years of not saying a word an MRI revealed that the language center of his brain was malformed from birth and he didn't actually have autism. What a cheery story. What am I supposed to think? The neurologist was kind and spent a lot of time with us. He did his best to answer all my questions. And that was the disheartening thing. This was his best and he was offering anecdotes about patients and stories about his late-talking kids. Telling me his "gut" felt Sofie wasn't autistic. He didn't offer any explanation for why Ms. Bubu likes to go to her magical world where you can wave your hand an inch from her face and she stares right through it. He didn't explain why Sofie doesn't want to point to objects she wants. But this was his best. This man is a specialist and he was diagnosing autism based on his gut. Autism is a mystery to everyone apparently. No wonder parents seek refuge on message boards and alternative therapy websites and books. One thing that made me feel very positive after the doctor's visit was the fact that the neurologist seemed so bored by Sofie. He sees very sick kids and Sofie is a healthy vibrant girl. It's a wonderful feeling to have a pediatric neurologist think your child shouldn't be in his office. We also had a follow-up with our pediatrician. She seemed short on answers too. But she said that we are smart to move ahead with the therapy and that she was happy with Sofie's eye contact during the appointment and was hopeful about the future. She said there is a lot of room on "the spectrum" and that time will tell us where Sofie fits on it.

It's confusing to be given so many opinions. I felt weird after the neurologist appointment. When we got home I noticed the evaluation arrived in the mail. THE evaluation, the one that diagnosed Sofie with autism. It was very long and detailed in explaining their findings. It scored Sofie as 14 months old socially and emotionally. And it scored her as 5 months old in regards to language. That's sobering. But reading the report it reminded me where we were a month ago. That was a different kid. The evaluation describes a toddler that roamed around the room and didn't look anyone in the eye, not once. It mentioned how Sofie was silent and never responded to her name. Seeing it all put out there in a two page report wasn't scary like I thought it would be. It was so much scarier when those observations were floating around in my head. Seeing it on paper just reminded me of how far we have come in one month. This diet is lifting the fog. We are moving forward. It was a great feeling after so much confusion with the doctors.

I apologize to anyone reading this, I am rambling so much tonight. My thoughts are all over the place. I will definitely have to get back to writing more often. There is far too much in my head.

I think with all this confusion I am learning that I need to embrace the diagnosis without letting it define Sofie. I don't KNOW if Sofie has Autism. She is showing a lot of signs of having mild autism. But she is also contradicting a lot of autism stereotypes. She loves hugs and kisses. She loves a good mess and taking things apart. She sleeps great. She eats well. She loves going to new places. All these wonderful things are making the professionals scratch their heads. It may be scary sometimes but overall it feels amazing to be the mother of someone so unique. She doesn't fit any labels. Isn't that amazing? My child is a true individual. She is such an individual that it appears she sees the world in a different way. She isn't blind to the world around her; she just sees it differently. When I think of it that way the road ahead doesn't seem as overwhelming. I don't feel like I have to make every decision based on a diagnosis. I just need to know my child. I just need to see her for who she is. I can do that.

Sofie's play therapist helped me with that realization. She came on Thursday to observe Sofie. She was attempting to get Sofie to stack blocks. Sofie knocked them over each time. And she made a point of scattering them all over the room. I was only seeing that Sofie was falling short of what the therapist wanted her to do. I sighed and said "She never wants to put anything together. She only likes taking things apart." The therapist said that Sofie thinks it makes sense for things to be apart. She isn't 'stuck' on the idea of chaos...she just prefers it. That gave me pause, I never thought of it that way. And then the therapist took Sofie's block box. It is this little box with a top that has shapes cut out. I have often tried to get Sofie interested in putting the accompanying blocks in those little cut-out holes. The therapist tried a couple of times to get Sofie to put the blocks in the box. Each time Sofie grabbed the box and ripped the top off and threw it behind her. I interjected "See? She loves taking things apart. It makes it hard to do games like that." And with that the therapist took the discarded top and placed it on the floor in front of Sofie. The therapist began taking the little plastic shapes and fitting them into the holes. She handed Sofie a little plastic star and she began trying to fit it into the square hole. I couldn't believe what I was seeing. Was it really that simple? Was I stuck in the box (so to speak)? Sofie sees the world differently. Why was I fighting that? She is exceptional. Why am I killing myself everyday for her to be an average kid? I just need to see her. If I see her maybe I can help her see me and maybe one day call me 'Mommy.' I think that day will come.

The wonder of numbers: a mommy rambles after a long day

I write tonight's entry in the "happiest place on earth." I have often been asked why Disney World holds such a place in my heart. Aside from many wonderful memories from family vacations, I also happen to love the whimsical side of life. I love pretty. I love color. I love fireworks. This may sound like the incoherent ramblings of intoxicated fairy but it's me to the bare bones. With all my neurosis and anxieties, I am drawn to beauty without getting bogged down by the details. I am obsessed with the ideas that push astronomy but I never even took physics in High School. I am someone who is good with a story but somewhat lacking when it comes to practical-no-frills-linear thinking.

And tonight I am wondering if my whimsical ways can help me with the road ahead with my Bubu. I have done A LOT of reading on autism. And I find it absolutely fascinating. But my usual struggles with numbers and statistics may be a huge positive in this situation. While it's the right thing to educate myself on the 'story' of autism and how it relates to my daughter, maybe its for the best that I have trouble retaining the stats of successes and failures with the disorder. Maybe its like my love of astronomy. I am overwhelmed by this amazing complex and beautiful little star. I want to learn how she works. I want to know how she shines. But reading up on the trials and tribulations of the galaxy won't help me with MY star. It is FACT that NO SCIENTIST has EVER seen my star. They have NEVER studied MY star. So how much can I put into the statistics regarding Sofie's future? I don't think I will put too much thought into that. I am going to focus on her beautiful story.

My little star's story is in the middle of an amazing chapter. She had a WONDERFUL day today. She was completely lucid all day long. We were travelling all day and she didn't 'space out.' She was laughing, babbling, crying and just being silly. She didn't cry when we got to the hotel. That is a really big deal. She wasn't overwhelmed. She didn't cry or act scared when she saw my family out of their usual context. She was just happy. My sweet little star. She is teaching me to focus on the story..our story and not my never ending research on autism. Her story makes the research amazing. All that I have read so far, shows that she is truly a remarkable and unique little girl. I am so grateful the diet seems to be helping her shine a little brighter these days.

And one more note in Bubu's story: We are starting speech therapy very soon :)

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.