Sunday, December 23, 2012

A Happy Holiday and Wishes for the New Year

I am having a wonderful long weekend with family and it is making me wish for an unreasonable gift from Santa: time travel. I want to go back to the day of the diagnosis and tell myself that Christmas would still be Christmas and my little girl was found on that day- not lost. I would say the new normal is so much brighter than the forced normal I was pushing for all those months. I would try to reassure that scared mom that whether this diagnosis is correct or incorrect has no bearing on the journey forward. I would tell her that the medical professionals offer few answers so embrace your mommy instincts. I would share that there are more tears ahead and more days of questioning. But I would be sure to add that with the diet switch little Bubu would become even sweeter and funnier. I could tell myself on that day a long list of wonderful things Sofie has done since the diagnosis. Instead, if Santa granted my wish, I would share one thing that "Diagnosis Mommy" would feel the full weight of-two days before Christmas I asked Sofie to point to the Elmo on my PJs and without hesitation she pointed to Elmo. I picture Diagnosis Mommy having a hard time believing that was possible-especially because it was one of HER far fetched wishes for Santa.  

Knowing the road ahead would be wonderful, I wish ANOTHER future me would visit me tonight and tell me about how Sofie is doing six months from now. Is she speaking? Does she know how to play like the other kids her age? But life doesn't work like that (no hard feelings Santa). Sometimes my head could explode with all of the different scenarios that could play out from a single action. I have to stop myself and keep myself HERE. And to be honest "here" is pretty spectacular. I have my health, the health of those I love, a roof over my head, and much more. And yes, I have a daughter that has been diagnosed with Autism. A beautiful daughter that is perfect and has been labeled with a disorder that doctors know so little about that they can't agree on the diagnosis. One silly stupid label- autism. The word is such an oversimplification. So many different stories are tucked away in that word-and yet doctors feel comfortable using it to label so many kids. Maybe Sofie has Autism but that one word fails in so many ways. It amazes me that doctors don't have more specific labels for the disorder. They simply talk about "mild" and "severe."If it is truly a spectrum, why only two choices?  I find myself thinking less and less about the word "autism" these days. My head is filled with the everyday, love for my family, therapy appointments and wishes for the day I am just sick of hearing Sofie jabber on about this or that. I would love that. I like to fantasize about her talking but I don't do it for too long. Because not so long ago, I was fantasizing about Sofie pointing, making eye contact, babbling and that is no longer a dream- it's reality. In many ways I guess you could say I'm living the dream. :)

Santa, you don't need to get me that time machine but a talking baby would be nice. But no pressure, Sofie is doing just fine. And I am deliriously happy to say that my little family unit is better than it has been in a long time. Sure the road ahead is going to be filled with big ups and downs but I feel like we can handle it. I'm not sure I will feel like that tomorrow. But two months ago I would never have imagined writing that.

I guess I got my Christmas wish early. Happy Holidays and thank you to everyone who has been in our corner.

Wednesday, December 12, 2012

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.

Monday, December 10, 2012

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 Bounces!

This is actually Sofie relaxing a bit before bed. Jumping calms her a lot. We have read that kids on the spectrum are often calmed by jumping. This makes sense because Sofie will jump for twenty minutes or so before she falls asleep in her crib. We decided to give her a head start on this particular night.

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!

Saturday, December 1, 2012

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.

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.