“I need to clear something up– Autism is sad, but I am not sad. Sure, the idea that my beautiful toddler once had words and eye contact that all drifted away is sad. Excruciating actually. Watching your 2-year-old pick up on social cues and respond to your face is secretly still hard for me to witness. And the fact that 1 in 68 kids have autism in the United States and yet we are not treating this like the epidemic it is… is not only sad, but infuriating. But I am not a sad person. I don’t want to be sad. I chose joy!
I chose joy because it is exactly that… a choice. I can’t undo my situation. I spent the first couple of years trying. When Sadie was three, people were still telling me ‘this is not autism.’ When she was 4, I felt there was still time for her to snap out of it and start talking. But as she has gotten older, despite therapy, prayers and effort on our end, Sadie has grown into her autism instead of out of it. Her autism is not going away. Autism is sad…but it can’t take my joy. I need my joy to survive this so I chose to look for a reason to be joyful every day. Surprisingly, it is not very hard.
Yesterday, Sadie not only vocalized ‘bye’ to her therapist when prompted, she wiggled her fingers as if she was waving. This hand movement equals hope and joy for me. Joy that Sadie imitated and joy that this therapist patiently waited and rooted for this moment even after she had clocked out. I feel joy knowing that Sadie has former teachers and even classmates encouraging her every day and joy that they will love her even when we hit a period of regression. When my eldest daughter Celia reported to me that a mom at dance class helped her with her shoes…I got warmth in my heart. Joy that this mom was gentle to my daughter and joy that my Celia noticed this act of kindness.
Last night at Panera (yes…we go to Panera A LOT) I felt deep joy watching Celia break off little pieces of her half of the cookie– the same half that she made sure was slightly bigger than Sadie’s– Joy as I watched Celia find her own joy in making Sadie smile. Joy comes in being grateful, joy comes in having a family to love and as a friend pointed out yesterday, joy comes in being enough just as I am.
I have learned that joy is found in the present. So even though it’s important for me to prepare for Sadie’s future, I can’t dwell there for long. I must stay grounded in today. As a new autism mom, I remember just wanting to know if everything would turn out alright. Would it all be ok? But more recently, that urge to peek at the last page of my story has gone away. My heart feels secure. I am ok not with autism, but certainly with Sadie. Certainly with our story. I know we are doing our best, and that it is going to be ok, because it already is.”
This story was submitted to by Regan MacKay Lister of Hummelstown, Pennsylvania. Her 7-year-old daughter, Sadie, has severe autism. Lister shares stories on her This is Autism Facebook page. Read some of her posts below:
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