Sunday, May 19, 2013

Speaking for Autism

This is Bella, my now five year old niece. She was about a year old when this picture was taken, and it was about the time that we started realizing something was not quite with her. She had only just started sitting up on her own by her first birthday, and had not yet started crawling. Her mother (my sister) and my mother both questioned her doctors about her development, but had been assured again and again that children just develop at different stages. She did slowly develop, and we celebrated every little improvement she made. She was a very happy, easily amused little girl who liked camera flashes, music, and her toys. But Bella wasn't like other babies. She sometimes didn't enjoy being held or comforted. She didn't react when you said her name. She had a very difficult time adjusting to change.

Not long after her 1st birthday, we noticed interesting behavioral changes in our Bella. She frequently covered her ears, especially if she was excited. It normally signaled something was upsetting her, but sometimes she would do it out of the blue. She would do repetitive motions too - she learned how to "kiss," but would kiss you five or six times in a row every time she kissed you. We thought it was cute. We didn't realize these things were necessarily the signs of autism, although we had our suspicions. 

By her second birthday, she was finally crawling. My mom was able to get her the help of various therapists (physical, occupational, and speech therapists), but doctors still would not give Bella a diagnosis. We were told she had a tactile defensiveness disorder, explaining that as her reason for not wanting to be held or touched. She continued with her repetitive movements, and still was not speaking. Some of us were able to get her to "sing" along with us to her favorite songs, but while she could mimic the melody, she couldn't say the words. My family was unbelievably frustrated. As any parent or relative of a special needs child can relate, we wanted to help her but were finding it difficult to do so when we didn't know what was wrong.

Shortly before her 3rd birthday, my little Bella underwent a series of testing at the University hospital hours from my family's hometown. The doctors tested her hours before a doctor told my mom he thought it could be cerebral palsy (a diagnosis none of us had considered). When the report was finally released, my family was left more confused and frustrated. Again, we were left without a diagnosis, with doctors instead claiming it was my family who suggested it might be cerebral palsy. UGH!

We finally received the "autism" diagnosis when she was 4. It was a relief, but only because now we could get the appropriate help for her. Bella started walking last year, albeit apprehensively. We joke that she looks like a mini-Frankenstein - her legs are fairly week, and she often walks with her arms out to balance her. She doesn't look ahead when she walks; instead, she looks around, usually with at least one hand in her mouth. That being said, she's fairly fast for being so unbalanced, and we find she quickly vanishes if we turn our backs for even a second. 

Bella still does not respond to her name. Although she loves to sing, she mostly mimics melodies and not actual words. She is still, for the most part, non-verbal. She's very affectionate, and loves animals (especially my basset hound, Diego). She is literally the joy of everyone's life she has touched, and we couldn't imagine life without her. 

I write this post today in memory of a sweet nine year old girl, Mikaela Lynch. Mikaela also had autism, with many of her behaviors sounding eerily similar to our own sweet Bella's behaviors. They are both non-verbal, do not respond to their names, and love water. Sadly, little Miss Mikaela tragically drowned near her home here in California last week. When the story broke that Mikaela had gone missing, my family immediately thought of our Bella and how easily it could be her. While we try to watch her like a hawk at all times, even we have stories of instances where we turned our backs and found her either playing in the toilet or pulling a dish down on her foot. Despite our attempts to be perfect, we're tragically human and fail to protect her from harming herself on occasion. My heart broke when I heard Mikaela went missing, and I cried when I heard she had drowned. I did not know the girl or her family, but I could only imagine how much pain they were in after losing their beautiful little girl.

What saddened me further was to hear the almost immediate accusations of blame against the parents from complete strangers. "Why didn't they watch her?" "Where were they while their children played outside?" The accusations ran the full  gamut, from child abuse to neglect. This angered me. I was happy when I found an article from the National Autism Association later in the week. Titled "The Wrong Questions Are Being Asked About Mikaela Lynch," the author goes into perfect detail in answering some of the "whys" while asking questions of her own. Shame on those "strangers" for kicking the parents while they are down - unless you've had to walk in their shoes, you honestly don't know what you're talking about. 

While I hope to one day hear my sweet Bella speak, or even have her recognize her name, I am so blessed to have this little girl in my life. I will continue to educate myself on her disorder, and hope that others will do the same. Children and adults with autism disorders are still people, and we need to treat them as such. They are not "less than," they're simply different. And how boring would the world be if we were all the same? If you'd like to learn more about the various autism disorders, please visit either the National Autism Association or the Autism Speaks website. Both have a lot of great resources and tools to teach you about autism, and what you can do to help. I appreciate you taking the time to read my niece's story - I know it was a long one, but it's one that will continue to grow from here.

Until next time...

--- Becks


  1. Wonderful response. I, too, cried when I heard about Mikaela's death. Life is too fragile to waste it making others miserable. We are all only human. We all live in glass houses. Not one of us can outwit mortality. No matter what tools we have to stave off it's impending visit, it will eventually succomb us all. How heartless it is to hear the cries of "guilt" by those not so aware of fragility of their own glass house.

  2. A beautiful post! Bella sounds like she is doing great! They told me my daughter would never walk, talk or do anything due to autism and hypertonia. She runs like the wind! And chatters up a storm in her own language and every now and then (more and more often) we hear real words! Faith will see us through! Through our children's hardships, through the endless battles of appointments and therapies and through supporting each other when sadly we come together to mourn for another family. Those that cry guilt have no experience in our world. Their judgment will come back to haunt them one day. Love your post :)