When I heard Kaylee had Autism I felt horrible. I felt horrible because I had no idea how to feel about hearing the news. I knew very little about Autism. As a Mom however, any sort of diagnoses is hard. No matter what the affliction is. There is such a pressure on normalcy and fitting into society that any stray from the path is considered a challenge. I truly believe this is because we have only set out one way to function for children and if they don’t fit well into that mold than they are considered at a disadvantage. One of the main first concerns of any parent is how their child’s diagnoses will affect them in school. If school was more inclusive than maybe we would see a lot less fear from parents.
I had known Kaylee since infancy and I can not even describe what a beautiful ball of light she is. As a baby I can’t remember Kaylee ever really crying. Probably because I had a six month old, the same age as Kaylee, who cried a lot. At my Baby shower for my second Kaylee played with her Auntie and enjoyed the day just the same as everyone else.
Every time she visited her family I was always blessed to spend time with her and she was a stunning treat to my life every summer. Hearing her diagnoses, I didn’t know what to make of it, seeing as how I honestly saw nothing “wrong” with Kaylee. She may have said less words than the other children, but she always smiled and played. When other children took things from her that she was playing with, she just found something else to do. When my own son was less than a stellar human being she just laughed and ran away, inviting him to a new game. Kaylee warms my heart every time I see her.
I asked Kaylee’s Mom if I could ask her a few questions about life with Kaylee, Autism in general, and how raising Kaylee is different than how I raise my children. She was more than happy and joyously joined me for a morning at the park giving me an open platform to ask anything I wanted. I grew up a lot of my child hood in a foster home and the children I grew up along side were diagnosed with a lot of different afflictions. I had never heard much about Autism and I had a lot of questions.
As it turns out, Kaylee’s brain is functioning and testing at a grade 2 level except she is slightly non-verbal. Basically she completely understands and has absorbed as much as a 7 or 8 year old but she can’t participate in those conversations. I can only imagine how frustrating that can be. Sometimes, after a long day with the kids it is hard for me to get whole sentences out and the frustration I feel is overwhelming. That is me. A Mother of two who has had her whole life to ask questions, and communicate effectively. Imagine a small child identifying at a much older age not able to garner the ability to ask questions they need to know.
With this knowledge I changed my path. I looked at Kaylee. She was slightly off in her own world but something told me she was listening to every word I said.
“What are the best things about Kaylee having Autism?"
The first thing her Mom said to me, almost brought me to tears.
“Kaylee can’t lie, that would be abstract thinking. When she tells you she loves you, she really means it”
I glanced at Kaylee and a small smile appeared on her face. It was all the validation I needed.
“She is very happy. There isn’t a lot that bothers her, unless you take away her iPad, anything else though she is happy to give up and move on to something else.” This part I knew and adored about her. "She also has no fear, which can be scary for me but I love how adventurous she is. Alot like her Auntie."
“We think she may see a different colour spectrum. Quite a lot like what photographers see in their lenses. A lot of people with Autism can see sun flares and orbs clearly” Sun flares are an absolutely gorgeous phenomena that happens in camera where you can see the suns ray, or reflecting orbs in a photo, I can not imagine how beautiful that would be in person. As I looked at Kalee I noticed she could not help but watch one spot on the ground underneath her swing. She smirks and it makes me feel like she knows how blessed she is to see it’s beauty.
“She experiences the world in a different way than we do. She takes so much in that she sees life completely different. I wish I could be in her head for just a moment.”
Kaylee’s Mom explained to me that she hopes Kaylee is proud of her Autism and advocates for herself later in life.
“In the 80’s and 90’s no one wanted to be defined as Autistic, but Autism is such a small part of who she is that I hope she does embrace it.” It was true. If I had to describe Kaylee I would say that she is smart, energetic, inquisitive, and loving. It was so interesting to me, I had spent all of this time saying “Yes, she is Autistic, but that’s not her” when instead I should have been saying “She is amazing, and her Autism is apart of that.”
I left Kaylee that morning feeling more enlightened than ever. Kaylee was smiling and laughing by the end of our time together and as I bent down to say thank you she gave me a hug and a kiss.
It was one of the most genuine and heartfelt hugs and kisses I’ve experienced.
I hope I do your story justice little one. As J.M. Storm wrote “She is beautiful. But you really cannot comprehend it until you understand that she is the result of the pieces that she refused to let life take from her."
*Special thank you to Jerilyn Jackson. You are a wonderful Mother and an amazing advocate. Your daughter is very lucky to have you*