The Adventures of Bubu the Window Licker

Sofie is keeping us running around 12+ hours a day, so we thought we would return the favor and let her run off some energy at the gym. On Saturday we took her to the Little Gym for a class. We had so much fun. She did great. She handled it so much better than our last attempt in November. She seemed more comfortable in her skin. I really think the diet is helping calm her a bit. What is funny is that calming Sofie means helping her run MORE and yell MORE. There was so much congestion in that brilliant brain; I think the diet and therapy techniques are helping clear the fog more and more-every day. Ozzy and I were so happy to see Sofie running around the gym squealing. There were so many kids and Sofie didn't check out. She stayed in the moment. The first 20 minutes of class she was very present and seemed to be loving every second of it. And after the first 20 minutes, those shiny windows were calling to our little mischievous Bubu.

We could tell the chaos of a dozen children running around was getting to her. She was munching and sucking on her fingers, pulling on her ears, and licking the windows. These things she does are so intimate. The cute little blond girl having a tantrum next to us was getting way more attention than our sweet little window licker. Sofie's unique ways of coping are executed with a coolness that her parents certainly never came close to having. I hope she does these things in such a cool manner because she is so comfortable with herself. I never want to think she does it in such a quiet manner because she is trying to hide it. I really believe that little girl KNOWS who she is. She will have such a unique voice- she already does without saying a word. At the end of class, the teacher blew dozens of bubbles and all the other kids were waving their arms in excitement trying to pop as many as their little arms could. And in the middle of that storm of cute little arms was Sofie quietly walking with a smile on her face intently looking at all the bubbles and selecting bubbles one at a time to pop. How did we get so lucky to have such a sweet girl?

On the topic of sweetness, I need to share a story from gym class. Sofie was trying to lick one of the windows AGAIN and Ozzy gently picked her up and said "I know Sweetie, those windows are nice and cold but they aren't ours-so we can't lick them." He said it so naturally. It was the highlight of my weekend. We are doing great and as long as we remember to "live, love and repeat" we are going to grow stronger each day (even on the crappy days).

Love to all of our family and friends, we are the luckiest family in the world.

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 Monkey on Our Bubu's Back: Bizarre Possibilities

So the past two days our little sweet girl has been a bit cranky. For all of her unique quirks with her funny personality, crankiness is generally not one of them. Frustration? Sure. Occasional anger? You bet. But she isn't usually cranky. It was a bit disheartening because she seemed to be adjusting to the new diet so well at first (even though it is still a few days old). I was doing my nightly homework last night and discovered something REALLY interesting. The biggest motivation for parents to put their kids on the Glucose-Free Milk-Free is that there is a lot of research that suggests those two things are making it hard for kids with autism to think clearly. That idea seems to be agreed on by a lot of people, it is the "why" that everyone has a different idea on. Ozzy and I thought one of the theories might not be so crazy. It is the theory that our Bubu is disposing of metabolic waste inefficiently. I picture this crazy analogy in my head:

When you are doing a really good job cleaning up the house, you are on a roll and you are putting everything in its right spot. And then you hit a snag, you either didn't realize that you had SOOO much junk or you are just tired and really have no interest in cleaning anymore, or maybe both. So you start just shoving papers wherever, the floor you meant to mop you opt to only sweep. And at the end of the day, the house is a bit cleaner but your tired choices created a bit of mess on its own.

That is the idea behind the opiate theory regarding gluten and casein (dairy) for children with Autism. Our Bubu is POSSIBLY taking in gluten and casein and instead of taking out the beneficial nutrients and having the waste pass through her, she is doing something truly unique. Her unique body is possibly "leaking" a bit of the gluten and casein out of her intestine and it travels through her blood stream and up to her brain where her brain is incredibly confused to have these unwelcomed visitors. The brain's reaction to these visitors may be inflammation or cloudiness that gets in the way of her brain communicating to different sections. Sometimes our Bubu is slow to pick up on something (especially in the afternoon), I picture the messages in her brain travelling in little slow-moving cautious cars in a dense fog. If this is the case, the diet will get rid of the fog.

The other theory is also very interesting. Some scientists believe that kids like Bubu are breaking down the gluten and casein into something completely different. They think that kids with autism are creating opiate compounds with the waste (that travel to the brain) and since they aren't getting rid of the junk like they are supposed to, the opiates stay and create a drugged-like state in some children. If this was true it would explain why kids with autism have such high pain tolerances (they are adorable pain killer-making machines) and it would explain the disorientation and confusion they often show. In short, bread and milk are making them high.

There appears to be some people that think both of these theories have some valid points. In regards to our little Bubu, I think it is a little bit of both theories. Bubu's foggiest time of day is in the afternoon after she has consumed two bottles in about five or six hours time. It would explain why when she first wakes up she is very alert and engaged (longest time without a bottle).

So how does this relate to the crankiness and regression? Well, if the theories are right, Bubu is in withdrawal from the opiates. The milk and breads helped her feel really great, incredibly confused but great. And she isn't exactly too concerned about lucidity, she is a baby. She wants to keep making those opiates (again, in theory). So the literature I read said that Bubu can experience withdrawal symptoms for about a week. Hopefully, after that it will be onwards and upwards. The book warns that Bubu has been making a lot of junk and that is going to take some time to clear out. So we are all going to have to be patient with her progress. That is going to be really tough some days. The book recommends that we do this diet for AT LEAST six months, even if we don't see much progress in those six months. Ozzy and I feel like she is already making little positive strides forward so we can't imagine taking her off the diet. I won't lie though, the diet is a bit overwhelming for us. Ozzy is awesome at reminding me that we don't have to fix everything in a day. Bubu is going to need some time. And thank God, at 18 months of age I think she has some time to figure out this stuff.

And I really feel it will be Ozzy, Bubu and me figuring out this stuff. There is a lot of information out there but not many concrete answers. It's okay, I have an amazing team to help me find the answers. Today may not be the most encouraging day but it is not even close to a really bad day.

Sunday was a good day

As I mentioned in the previous post, we had a wonderful weekend. We are working as a team. We are calling it "Team Bubulubu." Ozzy and I agreed that we are so lucky. After doing some research, we realized that our Bubu is truly exceptional. She may have autism but she doesn't look the part. I think that is why it is so hard to diagnose. I imagine a lot of toddlers aren't diagnosed because they don't fit the stereotype. I am VERY happy to say that our Bubu doesn't fit the stereotype. She is a great weight, great height, loves to eat, poops normally, sleeps well, loves hugs, loves kisses, loves going out....so many positive AMAZING things to be grateful for. I am not dellusional though. I can see that my little girl doesn't "get" language and because of that doesn't "get" how she is supposed to interact with her world. I think her personality has saved her sanity (and ours). She is amazing at entertaining herself. So when she gets frustrated and tired of the world around her, she goes to her playroom and reads. Of course, sometimes her frustrations are too big for a book. But she doesn't hurt herself or scream for hours, we are so lucky. I hope we never have to deal with that heartache. Fingers crossed.
One of the huge changes we made this weekend was Bubu becoming dairy and gluten free. I read so many positive blog posts from families with children with autism about the diet, we had to try it. Saturday night our little lady had her first almond milk bottle and she LOVED IT! :) :) :) Our Bubu is off Cheerios and on something called "Gorilla Munch." She LOVES that too! It is insanely overwhelming to understand what she can and can't eat. But Ozzy says "we'll learn." The idea behind the diet is that children with autism metabolize certain foods differently than "average" kids. It's possible that dairy and gluten make our Bubu foggy and overwhelmed. It is NOT giving her autism, absolutely not. But it is like my asthma, a cold winter night doesn't GIVE me asthma but my bronchial tubes react differently to cold weather than your average bronchial tubes. The big no-gluten-no-dairy diet is underway and is already showing some really cool subtle changes. Yesterday our Bubu patted her mouth and made a long "ahhhhh" noise while she did it. She hasn't done that in months! We have tried and she would just look at us confused. And yesterday she made great eye contact with Ozzy and me. She still retreated to her little magical world on and off throughout the day but the eye contact was solid at times. AND the biggest event of the day, after putting toys in her big box with Mommy we went into the living room. While in the living room, I asked her to put the toy in my hand in the box. She lit up when I said that and proudly grabbed the toy and ran to her playroom and put it in the box. That IS HUGE! She usually gets easily confused when you ask her to do something. She put toy after toy after toy in the box and each time ran back to get another. She was so proud of herself. Ozzy and I tried not to cry. I even got a hug after the last toy. Sunday was a good day. I am going to try really hard to remember that the next time we have a really bad day.