There is a post going around the special needs/autism community about the ways in which autism ruins parents’ lives. The article, written by someone who knows a family with a child with autism, focuses on the horrible ways in which their lives are affected and advocates for prenatal testing with the option to terminate if a positive is returned. It says all their lives would be better without that child.
As a parent of a child with a rare genetic disorder that comes with intense behaviors and another child with significant sensory needs that can lead to meltdowns, I share the outrage many feel over this post. It reduces our lives as parents of special needs kids to the hardest moments, to moments the outsider doesn’t understand and doesn’t want to see. It creates an image of us that is based on despair and fear of the unknown.
Today, our youngest had a huge meltdown at church. One of her self-injurious behaviours (SIBS) is scratching and by the end, despite my attempts to restrain her, she’d gotten her ears pretty good and her face was raw and bleeding. I missed most of lunch to calm her and was rattled afterward. If the writer of this article had looked at my life right then, he or she may have seen only the struggle, may have said my life was being ruined by SMS.
She would have been so wrong.
What she wouldn’t have seen during that loud and public meltdown was the incredible accomplishment my daughter had just made, staying in the nursery without me or her dad or her sisters or an aide for the first time. She played for over an hour with the teacher and other kids with no intense behaviors. She had fun. She controlled her anxiety. I sat outside the door of the nursery listening, tears in my eyes, because I was so, so proud of her.
What the writer wouldn’t see when she hears about the changes made to our lives to accommodate our children is that the bright spots are all the brighter because we and our kids have worked so hard for them. She doesn’t see us gleeful when our girl matches shapes or colors, says “off” with the “f” sound for the first time after months of therapy, when she jumps or stands on one foot. She doesn’t see the amazing hugs our daughter gives or hear her incredible laugh or watch with amazement as she learns a new sign in a matter of minutes. She doesn’t see that she loves the beach as much as her mama and has a silly sense of humor. She doesn’t see the love she has for her sisters and how much they love her in return.
The lives of special needs parents cannot be reduced to the worst moments. Just like parents of typically-developing kids, there are good and bad moments, hard things that we have to work through and wonderful accomplishments. Just like parents of typically-developing kids, we love our littles fiercely.
If I could wave a wand and take SMS away from my darling girl, would I? Yes, because it makes things difficult for her and it messes with her health. But never would I give up my girl to rid my life of SMS. Never would I consider my life ruined because of this syndrome. Harder? Yes, in some ways, many ways even. We have a long way to go with this challenging diagnosis and like the family in the article, there will be times we have to sacrifice, times we need help to help our girl be her best self. But Aurelia is strong and we, her family, stand strong with her, even when exhausted, inspired each day by her determination, her loving spirit and her silly ways. Never would I reduce our lives to those moments that are hardest. The good moments shine too brightly to be ignored.
MOOGIELIGHT 