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.
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