The Question I Want to Be Asked About My Daughter on the Spectrum

 

After my daughter Raelyn was diagnosed with autism, I got two tattoos in her honor. I think they were healing for me. I have one on each forearm, so I always get asked about them when I’m out in public. They can be a wonderful ice-breaker to get people talking about autism. Almost every time I leave the house, at least one person asks about my tattoos. I tell them about Raelyn’s diagnosis, and they often respond in one of two ways: They either say, “Oh, I’m sorry.” Or they get uncomfortable, look at me with pity in their eyes, and immediately change the subject. I’ve become so accustomed to these statements, I have my cookie-cutter responses already in my head.

Well the other day at Publix, the cashier left me absolutely speechless with her response. She asked about my tattoos, and I explained they are for my autistic daughter. Do you know what she said? Not that she was sorry. She didn’t look at me with pity or sympathy. This sweet, teenaged girl simply asked me, “What is she like?” I just stood there for a minute while I processed what just happened.

It’s such a simple question: “What is she like?” — and this cashier probably has no idea how much of an impact she made on me that night. I don’t know of one special needs parent who actually feels sorry for him or herself. Sure, we may have our bad days. Of course, it is heartbreaking to watch our kids struggle. But I believe the love we feel for them can negate all of those bad days and negative feelings. I may sometimes get sad when I watch my child working twice as hard to achieve the outcomes of her peers, but I don’t feel sorry.

I know people usually mean well when they say they’re sorry. But to say “I’m sorry,” I feel, is basically saying you pity our lives. You’re telling us anything not deemed “normal” deserves pity and sympathy. My daughter is so much more than a diagnosis. She has likes and dislikes, thoughts, feelings, strengths and weaknesses. Raelyn is an individual, just like any other person, with her own unique personality. So open up that door to let me tell you about her. Let me open your eyes to the beauty my child brings to the world.

Do not pity me.

I have the most amazing life I could ever ask for. I work with Raelyn for hours on things that may come more naturally to other kids. But you know what? The hours of hard work make those sweet victories so special to us. I treasure every milestone and celebrate things I may not have otherwise thought twice about. Working with Raelyn has helped me slow down and just enjoy every little thing that makes her unique.

You will very likely be put in a situation where someone tells you their child has autism or another special need. Don’t tell this parent you’re sorry. I can assure you they have probably heard that response thousands of times and are most likely sick of it. I challenge you to ask that person: “What is he or she like?” You may be surprised by what you learn.

Unfortunately, I’ve found people like this Publix cashier can be few and far between. My post, “To the Mom Who Doesn’t Understand From the Mom Who Wishes She Would” is about the ignorance society has regarding autism and is a great read if you are looking for more information on what not to say.

Images via Contributor.

A version of this story originally appeared on My Atlanta Mom’s Club. Follow this journey on Facebook.

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