I’ve written a lot about the hardships we’ve faced when it comes to Bella. I am no expert, but I wanted to share those issues in hopes that anyone reading this might find it helpful. While we have faced some hard times, I want to also talk about how, to us, Bella is just another little girl.
Bella and her sister, Rayne, have a bond that I think only sisters can have. When we found out about Bella, I was nearing the end of my pregnancy with Gage and Rayne was rounding that 3-and-half year old mark. When I started to notice that a lot of my attention was going to Bella, I started to fear that Rayne would get upset or jealous and we’d be facing a sibling rivalry situation. I won’t lie, sometimes, like any family with more than one child, we do have that rivalry issue. They fight over toys, and who gets to sit in the “comfy” spot on the couch. Who gets to take a bath first, or who gets the bigger half of the apple. You might be thinking that since Bella is non-verbal, she must lose most of these arguments, but she has definitely learned to hold her own. At the same time, they have a connection that I can’t explain. I’ve tried to explain Bella to Rayne in a way that she would understand but I still don’t really know how much Rayne truly comprehends of it. Regardless, Rayne is amazing with her sister. Rayne protects her and helps her and sometimes is the only one that can calm her down. There are many nights when we sit down and watch them on the monitor while Rayne tells Bella these amazing stories when they are supposed to be sleeping. There have also been times when we wake up in the morning to find that Rayne has crawled into bed with Bella to help her go back to sleep. There is a communication barrier between them, but they seem to understand each other perfectly. I once asked Rayne if she knew why Bella didn’t talk to her. Rayne said “because she’s a butterfly who doesn’t have her wings yet.” It might just be the creative words of a 3 year old, but to me, it actually makes total sense.
Bella also takes a great interest in her baby brother. She loves to give him hugs and kisses and even though she may not understand what it means when he cries, she does understand the behavior of crying. She’ll grab the closest stuffed animal and lay it next to him, then simply walk away. Because of her sensory issues, Bella tends to disregard what is around her and will sometimes walk over or step on anything in her path; because of this, Bella does have to be watched closely around the baby, especially when he’s having tummy time. It’s been suggested to us that we shouldn’t let her in the same room with our son, but that is not an option for us. It seems cruel to keep them apart. He is her brother after all. Like everything we’ve dealt with, a little rearranging and a few extra steps to insure everyone is safe is all we really need to do.
Even though Bella is non-verbal, she loves to “sing”. While she can’t sing the words, we notice that she instead sings the melody. Amazingly, she can match the pitch perfectly to some of her favorite songs. We aren’t really surprised that Bella has a love for music. When both of the girls were babies, Cy would freestyle nursery rhymes to them. They loved it. With their father’s background as a DJ, they’ve been exposed to many different kinds of music since birth. Music in our house is not just something to entertain us, it’s also very therapeutic. Music is universal and something that everyone can enjoy. Classical music has helped us during long nights when she couldn’t sleep. A little drum and bass is always fun to dance around the living room too, and a little bit of whatever is on the radio in the car has helped on long trips when she starts to get anxious.
Along with the music, is dancing. Something else that seems to comes very naturally to Bella. A common characteristic of autistic girls is something called Joint Hypermobility. As the name suggest, it’s a loosening of the joints that make her very flexible. It also gives her poor muscle tone which causes her to trip and fall a lot. However, when she dances, she can remain balanced and perform ballerina type movements rather easily. When she gets a little older, I think that she would benefit greatly from being part of a dance, ballet or gymnastics program.
Bella also loves to tell stories. Even though Bella is non-verbal, it’s clear that it doesn’t mean she has nothing to say. While we can’t understand her right now, it’s quite obvious to us that she is trying to tell us something. She tells these stories with typical Italian hand waving and gesturing and even seems to get upset with us when we don’t react the way she expects. She’s animated and excited when she “talks” to us which gives me hope that one day she will be able to communicate with us in her own words. Maybe not this year, or even next year, but I know that as long as we don’t give up, she won’t either.
There are so many things about Bella that are so normal and average, it would almost be boring to talk about. She plays with toys, she loves to draw and scribble and color. She loves picture books and toy pianos. She loves movies and could watch “Rio” a hundred times in a row. She loves the same things that any typical two year old would love. I’ve said before that caring for a child with autism can get stressful and hectic and downright exhausting, but ask any parent to a child and I’m sure they’d say the same thing. It’s part of being a parent and having a family. We all make sacrifices and we all have to learn a new way to live our lives when we have kids. Some of us just have to learn different things for different reasons.
I don’t want people to look at my daughter and only see her “autism”. Despite what some literature would have you believe, my child is not an “empty shell” and her life is not a tragedy. She’s our daughter and watching her everyday is like witnessing a brilliant painter create his masterpiece. Each day more work is put on the canvas and you can slowly see a work of art forming. That is what Bella is to us. She’s a work of art that is worth every second of time that goes into her. Everyone who has a child has a work of art in the making. You help create the parts that are missing, you help improve the spots that need a little work and for the parts that you can’t change, you learn to accept. No matter what though, you love them.
“"If I could snap my fingers and be non-autistic, I would not because then I wouldn't be me. Autism is part of who I am." --Temple Grandin
