Florence is a 4 year old living in Houston, Texas. She loves running barefoot, climbing, lining up set of objects by rainbow color sequence (ROYGBV), doing puzzles, cuddling with mommy and daddy (not so much with little sis), and everything Mickey Mouse. Most of the time Flo is a busy bee. Always doing something and on the go. Her sister Emma follows her around but she can’t be bothered. She’s also stronger and faster than most her age - has always been this way. Hence she comes off as a rough kid with no interest for peer play unfortunately. But beneath all this you’ll see how genuine and kind hearted she is. She really has the sweetest heart for people (and pets!), and how her mind works differently than ours is equally amazing.
Florence has autism and autism has no look. In a glance you won’t be able to tell that she’s on the spectrum. But it has visible symptoms you can recognize. We started noticing her lack of communication skills when she was about 15-18 months. 6 months later, we got officially diagnosed with Autism Spectrum Disorder (ASD) - moderate to severe level, non-verbal with observed deficits in cognitive and behavior standards.
Every individual with autism is different. Florence’s autism is not the glamorized version like in the movies. The severe side of it means simple daily tasks pose substantial challenges. For example, walking from point A to B. Her walk is a mix of hopping, ducking, lay down on the ground and so on. She couldn’t be stopped. After correcting it for about a year in therapy I can now walk hand in hand with her for a short distance and it feels amazing. Another huge problem is communication. She knows her numbers, colors, songs, where stuff goes and how they work, finish 100-piece puzzles in amazing speed but she can’t say mommy. Or her own name. Seems like she can’t grasp the idea that objects have names - how do you even teach that? Our “conversation” means me talking to her all the time and getting silent responses. She can’t express her needs and this has caused great frustrations for both her and us. These are among countless other issues we deal with.
Flo’s weekdays are filled with intensive hours of therapies plus visit to specialists. She works REALLY hard towards her set goals and I couldn’t be more proud of her perseverance and accomplishments. I try to balance her long hours with fun stuff at home and over the weekends. I like to expose her to different setups as part of learning how to cope with the real world. We have fun and do “normal” family stuff too like park run, getting an ice cream, and going on family trips. Aside from her academic and developmental goals I have one secret wish for Florence’s future - I wish for her to have a friend one day. To experience the gift of friendship simply by being themselves and enjoying each other’s presence. I know I’ll ugly cry when this day comes.
Obviously autism has changed our family course. We set boundaries with Flo’s limitations in mind yet we need to be flexible with our expectations as things progress. Also, my views on neurodiversity has expanded so much, pretty much from zero. I’ve found myself caring about issues that I wouldn’t have cared had I not have Flo. We‘ve also been blessed with amazing communities of special needs parents, medical team and therapists - a tribe I’m so thankful to meet along the way.
As people ask me how they can help, I normally say it really doesn’t take much. Start by embracing the diversity around you. A lot of people with disabilities that could be physical or neurological like Flo’s. Recognize them and actively include those different than you. There’s a good chance you’ll be ignored or they might not respond the way you expected. Please be patient if this happen. Trust me, your gesture is appreciated and a simple act of care goes a LONG way and you never know it could make a world’s difference in someone’s life. I have high hopes that recognizing the differences will lead to understanding of those differences, which will then bring us to the wonder of acceptance.
There’s a long road ahead of us but at the same time the journey itself is rewarding. So today I choose to celebrate Florence and our small wins, recognizing the little stuff that can be a very big stuff for her. We choose to treasure our time and be grateful for what we have.
Follow Indie + Florence: @cecilmalory