This guest post was written by Amber Nelson, who lives in San Antonio, Texas with her husband Chris, five year old son, Cash, and Lily, who is four. Nelson went on a skydive adventure on June 13, 2015 in Luling, Texas, and shared her story with us.
Love breaks all the rules.
Falling through the air 14,000 feet up at 180 mph certainly breaks a few rules, too. Breaking the rules, breaking through fear, breaking the expectations I have placed on myself as a parent, breaking through limitations, breaking ground in places doctors said Lily would never take step, just breaking it all up… that is what has made all the difference.
When we first received Lily’s autism diagnosis three years ago, I was in a bit of shock, which I quickly turned into a false understanding that I put up as a front to explain things to everyone. We were referred to a pediatric neurologist, who performed the standard diagnostic tests. Everything came back normal and a few appointments later, I was handed a bunch of pamphlets and paperwork and told to keep up with the therapies I already had in place for Lily.
So, then I began to research. I read everything I could about autism. It wasn’t anything like you’re allowed to believe on the outside looking in, until it sinks its teeth into your heart. It wasn’t even like anything that I was reading. It was my Lily, and now I felt someone had labeled her something other than my little girl. I didn’t really know what I was referring to, but after her diagnosis, I would explain to others that she had autism and that was why she didn’t talk, why she didn’t want to play with other children, why she didn’t walk normally, why she flapped her arms, why she would not look when you called her name, why she banged her head on the wall and the floor, why she screamed, and on and on. I gave other people this label for her and I didn’t even know what it meant.
I wanted to make everyone else comfortable and it was making my skin crawl.
I knew I had to understand autism in order to make the best life for Lily and for my family, but I had not yet touched on what that meant on life’s terms. I wanted to read something with all of the answers. I wanted something to assure me that I was doing the right things. I wanted to make the perfect plan and pursue that with everything that I had.
Then one day, it dawned on me I was spending so much time trying to figure out autism, that I wasn’t learning anything about my Lily. With a great conscious effort, those days came to an end and I worked on a balance between the two. When I came across Autism Speaks, I found a world within itself for families of children with autism. The Autism Speaks 100 Day Kit for Newly Diagnosed Families of Young Children was such an answer to prayer. From the Autism Speaks website as well as other autism resources in the areas we’ve lived, I have taken part in a handful of 5K’s and purchased several amazing shirts from Sevenly, which raises money for Autism Speaks. Every time I wear my Tiger “Live Loud” shirt from Sevenly, someone asks me about it, and I am given the opportunity to share with them about Lily, the power of Live Loud! and Autism Speaks.
Over time, along with autism, Lily has also been diagnosed with an Expressive/Receptive Language Disorder, which helped us understand why Lily doesn’t speak, but she understands beyond measure. Her inability to communicate gives me a whole new meaning and inspiration to Live Loud! She has also been diagnosed with PTen Hamartoma Tumor Syndrome. Begin, again, my researching. This go round, however, I didn’t lose myself in the abyss of knowledge to be gained.
My husband said it best one day, when he reminded me, in a heap of tears, that nothing had changed. Lily was still our Lily. I have the answers I felt compelled to seek and now I can move on from it. I can give Lily a voice, I can advocate for her and fill her with love and confidence, and not be so afraid of the future, whether I am jumping from a plane or into anything that gives me the chance to Live Loud! for my little girl, for my family and for autism.