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"She doesn't look autistic," says the well-meaning person. "If I didn't know, I wouldn't even be able to tell," she says again as to lend me some sort of comfort in the appearance of my child. "What does 'autistic' look like?" I wonder to myself as I smile and say something passive such as "well she is". I know they mean the best. I know they want to help. They don't see her cry and cover her ears in shear terror because she can't find the things she had strategically placed. They don't notice her, outwardly shutter at the thought of a change in our everyday routine. I do. I am here when the dark clouds roll in and the ear-piercing screams begin. I have watched her watch 18 hours of a single Netflix show and endured hell when they removed it. I have sung the same song or commercial jingle over and over until I wanted to poke pencils deep into my ears to make it stop. But no, she doesn't LOOK autistic.
The thing about a statement is, I'm not sure how you expect me to answer it. Should I say, "well Susan, I guess your right, thank you for setting that straight for us?"? Should I punch you dead in the mouth because, how dare you? Should I scoop her up and save her from all the things she doesn't do "correctly", to include looking autistic. Should I demand she just "be normal"? What is normal?
We have also encountered people who think lack of discipline is to blame for her meltdowns when they speak to her in the grocery store and she tries to climb my head. The annoyed looks as she has to be told a million times to sit down and not touch everything in waiting rooms. "I'm sorry," I whisper to the people around us, but am I? I can't stop it. She can't stop it. Why am I always sorry?
My daughter is a beautiful child. Okay, so all moms think that but, Presley truly is an adorable little girl. She has so many amazing qualities. She is bright and she lights up mine and my husband's whole world. The things she remembers would put geniuses to shame. Although, usually it's completely random and useless knowledge. The way she will tell me, that fairies are born of baby laughs and unicorns have to earn different colored horns. When she thinks I'm sad, she enchants my whole life in a way I didn't know it needed to be lit. I certainly always know what to expect from her. And then I don't.
Life will take her so many different directions. She is smart and beautiful, but she is not able to understand social cues. She can't tell she's upset you or that it's inappropriate to ask if you are a zombie. As her mother, I can only hope that the world will be kind, understanding, and forgiving. I can't be there for every moment as badly as I want to hover her with a giant imaginary umbrella, that will shield her from judgy stares in the supermarket and well-meaning strangers that unknowingly demand her "to just be normal." Sadly that's not possible as she already, at 6 years old, demands independence.
I remember a quote from when she was first diagnosed that read, "I would not change her for the world, but I would change the world for her." It has stuck with me through the years. Society demands normality but, what is normal? I have asked myself this question a thousand times. I have asked my close friends and family with tears in my eyes but, no one has ever been able to tell me. Our normal is very different from your idea of normal. I just wish someone had told me sooner that that's okay. It's acceptable that my "normal" looks like your "chaotic disaster". After all, we are both just parents trying to raise happy, healthy kids.
Being a mother to an autistic child has taught me two things. One, open your mind. So many beautiful things happen in her pretty little head, and every now and then, if I stay real still and sit quietly, she just might let me in. Its a different world inside of her, a world where everything is possible and beautiful. I am honored every day to be a guest in that world. Two, never mom judge. You see her standing there, screaming child at her feet. She sees you looking at her. She knows that you are thinking she is failing and how you would handle things so differently. She scoops her school-age child up and places her into the cart, hands her a cell phone, and rushes to finish her shopping. Her head hangs and she is defeated. The ABSOLUTE last thing she needs is you, behind her in the line, telling her how you successfully raised 27 children and never did they act out in the grocery store. Great for you, Brenda, keep it moving.
I am a good mom and I still go to bed some days thinking I could have been better, we all do. I will fight for the rest of my life for my child so that the world will accept her for the beautiful soul that she is. Being a mom, in general, is really hard. Being a special needs mom is like standing in the middle of tornado alley. When it's bad it can feel like everything is happening around you, but you've lost all control. You have two choices: let it destroy your house and your sanity, or grab on to something and rejoice in the calm days, no matter how few there are. You are doing great, mama. I believe in you. You are not failing and Brenda can shove it. I see how hard you are trying and I can guarantee that even if your child can't vocalize it, they know that you are a rockstar! Keep being her safe place.