Sunday, November 18, 2012

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 :)

Tuesday, November 13, 2012

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.

Saturday, November 10, 2012

Sofie in a Picture

I've been going through Sofie's pictures lately. I think this one could perfectly be used as the poster of who she is: sweet, kind, loving and curious. What else could a Daddy ever want in his kid?
One week in, I can still undoubtedly declare the following: I love my little girl, I wouldn't change anything about her, and I will work tirelessly to help her extraordinary self blossom unlimited. I'm the luckiest daddy I know.

Friday, November 9, 2012

One week later: Mommy has time to think

I cannot believe it has only been one week since we got THE diagnosis. What is funny is that it doesn't feel like THE diagnosis anymore. It just feels like the answer I have been waiting months to get. Along with many ups and downs this week (yesterday's Mommy and Me Class was a bittersweet down), I have been thinking about MY behavior as a mom...a very worried mom. I honestly can't even remember when the crippling worry started; it's hard to assign a day to when you started to lose yourself when you in fact LOST yourself for a time. For all of Bubu's life I have wondered if I was enough for her and that insecurity was compounded by my little girl's apparent boredom with me. I would enough say (sometimes cry) that she didn't really like me and that she plays by herself because I'm not enough for her. And THOSE terrible thoughts were compounded further by Bubu missing milestone after developmental milestone. "I did this. I messed up. Someone else would have taught their baby where their nose is. How could I be so bad at this?"

I have an amazing family, friends and husband that tried to reassure me but the bad thoughts were eating away at me and I was lost. I would sometimes call my pediatrician and ask if Bubu's unique personality was "normal." And time and time again I would hear "it's behavioral." Well, this made me feel even smaller. In my delicate condition I was hearing "she is just reacting to you really not doing your job." I was told that they were a little concerned about her speech but that we should just give her time. I was told that I should try making her ask for things and stop anticipating her every need. "Try to wait for her to ask for juice or lunch."  And so I tried and I failed (or at least that is how I saw it). If I didn't put her in her highchair, Bubu would just completely skip lunch. She would just roam the apartment and EVENTUALLY start making her throat noises that may or may not be her asking for food. I didn't know if they were related because she didn't say them TO me; she was just talking to herself walking around the apartment. Bubu got more out of it as the day wore on. That was our routine, by 4:00 she wanted to be by herself (and I wonder if she thinks she was). She would just sit in her playroom and read, ignoring my calls. I hated that time of day and it would make me irritable when my husband would come home from work. I was feeling rejected before he even came in the door. This cycle I was in was out of control. And I was ashamed to share it with anyone, so now in a counter-phobic move I am putting it on the internet.

This summer the cycle completely wore me down. We were going on a nice family vacation and I was sick with anxiety about it. I was dreading it and didn't know why. I know I was concerned about the heat and Bubu but this thought shouldn't have consumed me like it did. And today it dawned on me why I completely broke down on that vacation (I was a mess). I was consumed by this one idea "she won't tell me if she is hungry, thirsty, or overheated. how can I keep her safe on this trip?" That thought was the tipping point. I was already feeling like a failure and this trip I thought made me a dangerous one. After that vacation I went on Zoloft. I only add that on the off chance a desperate mom like me comes upon this blog entry. I am pretty sure only my friends and family read this, but just in case-it's okay to need a little extra help.

Around the time Bubu turned 15 months was when I really started to panic. While my Bubu was getting cuddlier she was getting a whole lot more quiet too. The throat talking was the main way she spoke and the very few words she had were disappearing. With each passing day, she was retreating a little bit more. I'm one of the lucky ones. My daughter's autism doesn't express itself with hours of screaming or self-harm, she disappears. It was like living with a beautiful ghost and it was breaking my heart a little more each day. We were losing her in pieces. She used to say "bayyyy-beeee" perfectly; it was one of her few words she said. And then she would only say it sometimes when you asked "Who is that [in the mirror]?" And then the word was losing ennunciation. "BAYYEE." "bayyye." "bay." And the last incarnation of "baby" that scared me to my core, she didn't say anything she would just pat her chest. WHERE DID THE WORD GO??  WHY IS THIS HAPPENING SO QUICKLY??? I was terrified. My husband was terrified. And we were losing our words too. We didn't want to say how scared we were. We had a respit from the worry when our pediatrician said "I know what autism looks like and she doesn't have it." He should have said he knew what SEVERE autism looked like and admitted that he didn't know my child's face like I did. I should have been relieved by his assessment. I should have been happy when the speech therapist said we could wait a few months and give Bubu more time. WHY WASN'T I RELIEVED? Why was my home still so tense?

And so a week ago, we got the scary diagnosis-autism. But why do I feel so positive only a week later? Why do I feel like my marriage is stronger than it has been in a VERY long time? Why has there been so much laughter and happy tears this week, of all weeks? This was supposed to be when the world crumbled. The other diagnosises were the "good" ones and yet I haven't felt like this in forever. I'm HERE and ready to help my daughter and be a loving wife. I don't feel lost or numb. I feel happy, scared, excited, and sometimes sad (yesterday really sucked).

Ozzy and I adopted the new family mantra "live. love. repeat." We are just going to try very hard to live those words. I spent so much time thinking I was the problem. Bubu wasn't interested in this world because I failed. She wasn't maturing like other kids because of something I did. Now that I know something so much bigger was happening I can forgive myself for something I apparently never did. Maybe I didn't fail. Maybe this is just a crazy genetic lottery. And now instead of being broken by the times Bubu "goes away" I am only a little sad. I know she is going to her little magical world she created for herself and I am so proud of her that she was strong enough to create such a place for herself to regroup and soothe herself when this world's stimuli become too much. And thanks to lots of love and the new GFCF diet she seems to like this world more and more each day because she can see it clearer. I'm just thankful for a lot of stuff tonight. My little girl pretended to give me her bottle today at lunch and she thought it was the funniest joke ever. Today was a wonderful day, maybe I am enough for her.

Time for sleep.

Happy Sofie

Ever since "the news", times like the ones in this picture remind us of how lucky we are as a family. Nothing compares to an innocent and happy child with all dreams and hopes ahead!!!!

Wednesday, November 7, 2012

Something for us all to remember....

This diagnosis changes absolutely nothing about the sweetest baby ever. It's only going to help us understand her better and HOPEFULLY it is going to help us teach her to share her spark with the world around her. I am going to play this on repeat on the bad days. This video was taken tonight. Our silly little lady was laughing at the lamp and we had to capture that smile on film.

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.

Tuesday, November 6, 2012

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.

Monday, November 5, 2012

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 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.

A-Day...the day it all changed...and didn't.

Thursday we found out that our little Bubulubu has Autism. Looking at the word on the computer screen is still really weird. "My daughter has autism." Can that be true? I know it is. My husband, Ozzy, and I have held our breath for months and months wondering why our little girl reacted a bit diffrently to life than other babies. I was so scared, still am I guess. Our little Bubu is 18 months old. People tell me it is a real blessing we caught it so early. I hope they are right. I am going to work really REALLY hard to make their predictions true.
This has been the craziest most surreal five days of my life. Thursday Ozzy and I collapsed on the floor sobbing after the specialists left our home. AUTISM?!? What did I do? What did I do? What did I eat when I was pregnant? Where did I go when I was pregnant? How could I let this happen to my baby?  I spent the next two days trying to remember how I accidentally ingested or exposed myself to my Bubu's kryptonite. I'm not blaming myself every minute now. I have my moments where my mind goes there but I am working really hard to not stay "there." I'm working really, really hard.
After the first grueling 48 hours, we were lucky enough to have a weekend where Ozzy and I didn't have to work. It was the best weekend we have had, since I don't know when. I think it was the first time we REALLY saw our Bubu for who she is. She isn't this scary question mark. She is an incredibly unique person, and just like the rest of us, I have absolutely no clue what her future will be. That is scary as hell but oddly beautiful too.