Monday, April 1, 2019

Spectrum and Sharing

Have you ever looked through a prism and noticed the colors that shine through? The brilliance of the rainbow that radiates warmth from the sunlight in the background. Perhaps you have never looked closely at those colors, inspecting each of them and changing your own perspective, closing one eye, opening both eyes or squinting to change the shape or size of the color. The magnitude of brilliance is seen individually even when two people stare at the same vision of light. To me, that rainbow, that opportunity to look at something beautiful and unique is autism. As no two people are alike, no two journey's are alike and making autism work in my family will look different than autism in someone else's family. I have grown to understand this as we have grown in our journey.

This month, as we enter Autism Awareness Month, I ask that people be open, understanding and aware that your journey with disabilities or different needs is unique. I can learn from others just as they too can learn from me and learning to accept that there will be times to listen, understand and grow will allow us to move the momentum forward and change awareness into acceptance.

Yesterday I encountered a lovely family while out. The children, interested and intrigued by my daughter had questions as to why she was in a stroller and when she didn't respond quizzically asked about her. I took pause in not knowing how to respond. Coming home, I jumped on Facebook and asked my friends as to how I should have handled it. For me, its difficult. Sadly, some parents don't want their children to know that children have autism. For others, they think its something their child can get (yes, this has actually been a comment) and yet for others, they are open, want to share and teach their children through encountering others with different strengths and weaknesses. I believe that knowledge is power and frequently share as much as I can. For me, that is our journey but I also respect other families choose to keep their own journey more private. I believe it takes all kinds. I wasn't sure exactly what to tell these beautiful children so I simply said "she thinks a little differently". I mouthed to mom that she had autism and hoped that perhaps she would share more on the journey with her children privately. A number of friends thought my answer was okay, others had some great suggestions and I learned so much from their responses as well. I am grateful to know so many people willing to teach and learn with respect and kindness and I truly believe 15 years from now, this month will be considered Autism Acceptance Month, not just awareness.

For Seraphina, life is different. She sees things differently and since choosing to look through a lens along side her, I too see the gifts in things I never encountered before. Seraphina is considered "high functioning" but even that diagnosis looks different from that of another child with the same diagnosis. Although Seraphina is thought to be of typical intelligence, autism impacts her social and emotional communication and her ability to function in life. She is not deemed "disabled" enough to receive services through PerformCare but she is deemed "disabled" enough to receive a handicap sticker. She is beautiful and looks similar to peers her age and for her, physical capabilities abound. She's never qualified for physical therapy and her ability to throw and catch is on target for children her age. She has strengths like independent play, imagination and the ability to use echolalia to communicate her feelings or sometimes even answer questions. Then there is functional communication. For me, this has always been a hot button and so after some discussion on my post, I want to clarify communication for Seraphina. One comment that stood out was from family and its so hard for me to tell everyone in my family where we are on this journey. Living so far away from everyone, they see pictures and hear stories but to actually explain it all individually is exhausting. Its actually part of the reason I blog. While my daughter has the ability to speak, knowing how she feels is a challenge and something we work on daily. Its also something that we strive to understand.

Seraphina is considered verbal and has recently lost her "apraxia" diagnosis. She knows general words and topics but cannot "tact" or appropriately identify more specific items. Just the other day she couldn't begin to ask for blackberries because she identified them as raspberries. Unaware that the fruits, though similar had different names. A few weeks ago with a new therapist in the house, she wanted milk. Instead of asking for it, she begged for "reefermilk" a combination of knowing we keep milk in the refrigerator and the need for a drink. Seraphina cannot have a conversation with others and even answering simple questions becomes a challenge that we consider a demand for her. Prior to having her in my life, these concepts were all foreign to me.

Yesterday, my two oldest girls giggled with elation when out of the blue Seraphina asked a question of her siblings. I am fairly certain her question of "what is your favorite food" was rote memorization from a program at school but she did ask a question none the less. Shortly there after our hearts fell when her sisters began to converse back and she looked away, out the car window unsure of how to answer. Seraphina has language however she does not have functional language. I often say if I could do anything to get inside her beautiful mind and understand things as she does, I would be the luckiest mom alive.

I don't pretend to know it all about autism. In fact, I learn and grow every day in knowing my daughter, other people on the spectrum and those who love, support and raise these children. I frequently ask questions of others, siblings of adults on the spectrum, parents of those who have already walked this journey and of course any adult on the spectrum I meet today. It is my hope through our story, that I will shed light on our journey and the path to seeing the beauty on the spectrum because honestly, although its the hardest challenge I have ever faced, it is the greatest gift I have ever received.

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