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.

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.