Growing up, I never really thought about having kids. I wasn't really for it or against it, just something that I didn't think about. And now I have two little girls and know most of the lines to Frozen and watched the Cinderella movie when it first came out.
Bella was small when she was first born, just about 5 pounds. When she was first born she wasn't breathing, they had to give her oxygen before I could hold her for the first time. But, she was perfect. For the first few months, she was no different than other newborns, she spent most of her time either sleeping or eating. Interestingly, she spent almost no time crawling, she transitioned from rolling to walking very quickly. She was walking at 7 months.
Then, as she got older, she didn't seem to hit all the milestones that you read about in those books. Before having a child, I could not have cared less about how some book said to live your life. In fact, I would take pride in doing it differently than the book said. But, with a child, you feel so helpless and everything seems so new. They depend on you for everything and it is terrifying that you have no idea what is going on. So you turn to these books for reassurance. If your child is an outlier, you immediately fear for the worst.
It was clear from an early age that there was a lot going on inside Bella's head. She loved playing with toys and could concentrate for far longer than she was supposed to be able to. It was also clear that she had no intention of letting us in. She liked being held, she was very affectionate, but she had no interest in communicating. At first, that didn't matter, but as she began to have her own wants and desires, her lack of ability to communicate meant that she would simply fly into a tantrum if her needs were not meant. We tried to adjust, but it was hard. I hated seeing her sad. Sad doesn't really describe it, she would go into a full meltdown. One time we went on a simple trip to a local horse farm near our home. We had been there before and Bella loved it. This time something was different. It was cold and she needed to wear a jacket. She resisted at first and I tried to coax her into it. It only escalated from there. She started crying so hard she could hardly breathe, kicking and fighting and screaming all because we tried to make her wear a jacket in the winter. Perhaps she didn't like the color, perhaps she didn't like the way it felt against her skin. Regardless, she couldn't tell us. Kids don't have poker faces. You can tell their emotion at an instance. Which is why you can't help but smile when a baby or a toddler is laughing, no matter how you may be feeling. Similarly, it rips you to the core to see a child so upset and angry that their face is flushed and their face is streaked with tears.
Finally, we relented. I simply held her and wrapped her up in my jacket. The worst part is that you feel constantly judged. You feel judged when your child is crying uncontrollably and running away from you just because you want to put her jacket on. Then you feel judged because you are carrying a child who can easily walk and she is not wearing a jacket in the middle of winter.
Eventually, we had to address the elephant in the room. Tuyen and I had both been reading about Autism, but neither one had brought it up to the other. Tuyen took her into the school to be evaluated, and they confirmed what we had suspected. Still, it was devastating. We could no longer hope that we were wrong or that this would just pass. Fortunately, she started getting the help that she needed. The first thing I noticed is that they had taught her not only that she had to wear a jacket, but she actually wanted to put it on now. The teachers explained that unlike me, they had not relented. They had given her an ultimatum, if she wanted to play outside, she had to wear the jacket. I guess I wish I could have been stronger and not let her cries and tears affect me the way they did. But I wasn't.
Looking back now at age 7, she has progressed so much. She interacts with people, tells us about her day at school and just had a birthday party. She is in a regular class and only occasionally needs help. I think she will always be a bit different than most in the crowd, but she gets those genetics from me. I was never diagnosed with anything when I was younger but I remember greatly enjoying being on my own and spending lots of time alone. I remember I didn't have much control over my emotions, sometimes the smallest thing would make me burst into tears, like getting a bad grade on a spelling test or someone calling me names. I never really felt the need to make friends. Even now, I feel awkward in a lot of social interactions, particularly with strangers. Its hard to look them in the eye and I will never be the type of guy that can work the room at a party. When you are very young, I guess everyone is a stranger.
I know family and others that are close to me are sometimes frustrated about my ability to express myself. For instance, I probably could not have told this story aloud to anyone, even my wife. So I hope it goes with Bella. I have to have confidence that she will find her own way in the world.
More importantly, I have to accept it. Recently I heard a great podcast about Autism. The beginning of the podcast was a success story in autism, how a family had managed to get their son out of his shell and engage with them, even on a small level. While this was uplifting and in many ways mirrored our success story with Bella, the most powerful part was a doctor that had spent a great deal of time in the field. He had an adult son with autism, far more severe than Bella's. He explained that in most cases there are no success stories and Autism rips families apart. His son was celebrating his 19th birthday party and still had to wear diapers.
He was right, it almost did rip our family apart. If Tuyen and I were equally strong, it would have ripped us apart. Fortunately, she was so much stronger and I feel terrible that I made her shoulder most of the burden. Early on, I could not even talk about Bella's condition without sobbing. I just wasn't ready to face it. When we would go into meet with the teachers, I would hide in the corner, pretending to play with our youngest so that they wouldn't be able to see my face. Tuyen had to handle the difficult conversations about where she was succeeding and where she was struggling. Of course this made it much harder for Tuyen because she couldn't talk to me about it. So it was yesterday, when Tuyen spent her entire Mother's day making sure Bella's party would be perfect for Bella. Making sure everyone's needs would be met. Perhaps this should be in a card for her and not here - but thank you for truly being a mother and making us the family we are.
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