Thursday, March 10, 2011
Swimming with the Fish
My life is surrounded by fish. Pictures of fish, fish toys, fish stickers, clothes with fish on them. Who am I? A Marine Biologist? No, just a mom. A mom with Autistic children, 4 autistic children to be exact. How does this happen? People wonder almost immediately, once hearing that all 4 kids are struck with this disease, some even ask us as if we have any idea. We have theories but it doesn't really matter because as much as it would help to pinpoint the cause the fact of the matter is that it's too late for us. Our life is about living and loving and dealing with the disease, not dealing and then living and loving. I'd love to sound wise and knowledgable but Autism manifests so differently for everyone affected. I'm an expert of my children but I'm simply going with the flow.
Our journey into the bottom of the ocean was subtle, well, at least we think it we was subtle. Others on the outside made comments and I thought they were morons. What did they know? Aren't all preemies a little delayed? They don't make eye contact, you say, may be they can't see. Let's go to an eye doctor. Wait, they don't respond to their name? They are just stubborn. Could they be deaf? Let's go to the audiologist! They don't like to eat? Hell, we can see a good 4 or 5 specialists on that. It more than likely that I just can't cook. Denial is a powerful force. Sometimes you can't see what's right in front of you. The idea is so abhorrent to you that your mind just shuts down and makes excuses. I can explain away anything...anything.
And then one day you see EVERYTHING. There are flashes of lights, your head hurts, your heart hurts, you vomit, you open your mouth to speak but the reality of you life steals your voice. You want to cry but you are choked with the force of emotion, crying becomes a small Princess bandage on a gaping wound. The day I realized what reality was didn't begin with my first daughter. She showed so many signs but she was just so cute! She would outgrown her quirks. But my second daughter...she rocked my world. We had already lightly entered into the world of therapy with Baby A. She needed some help learning how to eat and making sounds. But then Baby B woke up one morning, this beautiful little girl that had said, "Night Mommy!" the night before woke up staring at me blankly and I asked her if she was okay? Did she need a hug? Nothing. Silence. "Baby B are you okay? Honey, it's Mommy! Can you hear me?" She looked at me, drooling and punched herself in the face. Her head slammed again the crib and I reached for her and she fought so hard. Her body was rocking and she kept slamming her head again the floor. I thought she was having a seizure. My wrist and hand cradled her head and I felt the crunching. My body was numb, I was in survival mode. I knew it was my hand hurt, not her head. I was begging her to look at me. I was crying so hard that I couldn't breathe. We saw the doctor that day and it wasn't a seizure. It wasn't a seizure. My baby, oh God, my poor baby. She woke up the next morning and we went through the same thing, except this time my wrist was wrapped to protect my injury. We sat on the floor with Babies A , C and D. I cradled her and cried for 8 hours. I stopped to get bottles and change diapers. She fell asleep exhausted. The local hospital gave us an appointment 2 days later to see a neurologist.
I remember walking into that office and seeing children with obvious deficients and wanting to turn around and run. A quiet unassuming mom saw my look of bewilderment and grabbed my arm. "Don't leave! Stamp that paper there and fill out those forms. I'm so sorry but you'll get used to it." I did what she said and took a seat. Baby B screamed the whole time, slapping and biting herself. Like a broken record, I said, "It'll be okay, it'll be okay. You're okay." Remarkably, I don't remember most of what the doctor said. She referred us to a special specialist and told me to look up autism spectrum disorders and to call her with any questions. She explained autism and I was nodding my head so hard that I began to get a headache. I walked out and decided to walk home with my baby. Sometimes you need to be alone with your thoughts and I couldn't figure out what to say to my family. I couldn't figure out how to open my mouth and speak and then I realized that this must be what Baby B feels like. She knew how to speak, she was saying Mommy, Daddy and so much more. She had been silent for a week at this point. Baby B was diagnosed with ASD when she was 24 months old.
I began to read manically about autism. The treatments, the drugs, the theories on the causes. I arranged the Early Intervention meetings. I geared up to fight for the maximum amount of therapy. I turned into an Early Intervention guru. Ask me a law, I knew it. Ask for a statistic, I had it. Ask me how I was doing, and I was silenced. I couldn't say it. I was broken. I was terrified. I was depressed. I dreamed about running away. Every morning I woke up 10 minutes before Baby B so that I could cradle her head before she woke up so that she wouldn't hurt herself. We didn't understand at the time that it was the transition from sleeping to waking that was the issue. We were just baffled and doing our best.
I constantly thought that my best wasn't enough but I was wrong. My best, my husband's best it was more than enough. I look at Baby B smile and laugh and dance and I know she's going to be okay. She has joy in her life, we are enough.