This is a post by Lindsey Lewis, who works for an in-home ABA agency in Orange County. She wrote this tribute to the moms she works with because she truly feels they are the heart of autism.
We work in a unique field in which we find ourselves in the private sanctuary of those we work with–their home. I think it can be easy to forget how personal and intrusive our services can be when we lug our bags of toys in the front door every day for two (or more) hours, move around the living room or yard or kitchen, ask for accommodations, and make ourselves comfortable. I can’t help but think: most mothers use their homes as their refuge from the world; a place to keep their children safe and warm, a place to nurture their marriages, a place for privacy and solitude. A place they can let their hair down, put their feet up, and feel most at ease.
And then I think of the “Autism Mom.” I think of her home, her life, and the strength she may not see in herself. But we think the Autism Mom is super woman.
She is a woman that wakes up every morning with a schedule. And I’m not talking about a schedule like dropping the kids off, going to yoga, a lunch date, or a trip to the mall. I am talking a schedule that includes more acronyms than any mother should know: PT, OT, ABA, SDC, IEP, RCOC, PC, DI, IFSP, BIP. Her day requires planning from start to finish. She is the first to wake up and the last to go to bed; her life is in constant movement.
She is a woman that has allowed her home to become grand central station; an endless revolving door of play dates, activities, meetings, and services on top of every day routines like bathing, meals, and cleaning. The walls around her are covered in visuals, schedules, and data sheets.
She is a woman who does not think about herself, but constantly thinks of her children. She struggles to balance the needs of her child(ren) with autism with her other children; trying to find a way to show each of them the abundance of love she has, even though she is stretched so thin.
She is the woman who is home, every day, at the same time for therapists and consultants. She puts aside her own needs and schedule so her child can receive hours and hours of therapy. She opens her door to strangers who, over time, become part of her daily routine and her family.
She is the woman who has dealt with ugliest of tantrums and the pickiest of eaters. She has dealt with the judgmental stares of those that have not walked in her shoes and the unsolicited advice of family and friends. She has dealt with the most devastating setbacks and the most celebratory triumphs. She has dealt with tears—tears of anger, tears of pain, tears of sorrow, and tears of joy. Yet, in all that she has dealt with, she opens her door with a smile and allows us in.
She is the woman who offers us coffee or water, when she herself has yet to sit down and take a sip of anything. She asks about our families, spouses, children, and lives before sharing anything about her day. She stops herself from complaining and venting (even when she has every right to both) and keeps moving, eager to see what progress the session will bring.
She is the woman who trusts what we do, the advice we give, and embraces the support we provide. She challenges herself to change her own behavior to better the daily living of her children and family. She has learned that every decision she makes has a consequence that can affect her child and she may weigh her choices more heavily than most.
She is a woman who is moving to overcome her fear of the word “autism.” She has googled every therapy, every vendor, every doctor. She can anticipate a tantrum before anyone else can sense it. She can understand the unclear language of a child that once could not speak. She can see the way her child shows love, even if it is not through hugs, kisses, and words. She is a woman who sees past stereotypic behaviors, limited language, and having to assist the most basic of skills and she sees the child she knows inside and out. The child she loves. The child she fights for. The child she advocates for. The child she believes in. The child that makes the entire journey worthwhile. Instead of breaking down in grief, she has stepped up and marched on.
The Autism mom and her home are special. She does not always get to relax, kick up her feet, and enjoy quiet at the end of the day. She has little to no privacy. Her hair may not be washed, there may be dishes piling in the sink, and the laundry is scattered all over the couch. She is tired, hungry, stressed, and anxious, yet she is giving everything she has to give. She does it for her family. She sacrifices so much and asks for so little because of the love she has for her children. Even on the darkest of days, she does not quit; she does not let the challenges get the best of her. She does not use her front door to shut the world away once she is inside; she allows the world in for her child. Her home is the heart of her day, and she is the heart of her home. She is the Heart of Autism.