Her ‘disability is invisible.’: Mom painstakingly navigates outings with daughter who has severe autism

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“Autism requires strategy. Even though before going into Panera Bread I sat in the car and came up with a strategy for our mission to order and eat food in a public place, we will still look like a hot mess for the next 30 minutes. There is a great quote by Harry Winston: ‘People will stare… make it worth their while.’ We do exactly this despite our effort to blend in.

If you see me in line, I am holding both of Sadie’s hands within mine. That is because Panera strategically places giant cookies in front of all the registers. I have had to purchase so many of these bakery goods thanks to Sadie’s ninja hands, but today will not be that day. There are phones in everyone’s hands as they wait. Sadie sees them and she wants them. Oh and the glass… For some reason, Sadie loves to lick glass. It’s gross. I am the first to admit it. I can’t imagine being an onlooker, especially 7 years ago. Today Sadie will not lick the glass. Sadie is jumping and making a strange noise that I don’t even register anymore.

People are staring. Of course, they are. A lot of times, people exchange glances with each other. It’s ok. I would stare too. I think I am ok with it. I only worry about how it affects Celia, my eldest daughter. I am always trying to teach her to stand proud and not let it bother her, but she is just 10 years old. I won’t pretend that I ‘get it.’ I have not experienced her young view of all this.

I am talking to the attendant, prompting Sadie, and trying to be a normal mom for Celia. Actually, I think we are doing awesome. I am ready to pay. My credit card is in my back pocket. I wisely placed it here ten minutes ago for easy access so I would not need to look in my purse. I release my hand from Sadie’s to insert my chip and… *#@%! We are now the proud owner of a Panera Chocolate Chip Cookie. Sadie wins! Celia wins too because it’s only fair. Seriously… I get the whole symmetry thing, but sometimes I think three hands would have been so much more functional.

Regan MacKay Lister/This Is Autism

That was a lot of work and we still have the hard part–waiting. Fortunately, we have (I mean HAD) that cookie. Sadie finished eating half. The other half she dropped. I have to prevent her from grabbing it from the floor. But Sadie is a big advocate of the 5 second rule. She wins again. By now the onlookers have caught on. They are probably coming up with their own hypothesis. For some reason, I feel better about the staring once people realize her disability. I think its because I tell myself they are no longer thinking it’s just bad parenting. Why should I even care? So now my job is to keep Sadie from grabbing Celia’s cookie, other people’s food or the cell phones. This has happened. And since we are not using screens ourselves, I start singing ‘One Two Buckle My Shoe’ and pulling out 6 to 36-month toys from my bag while trying to have an intermittent conversation with Celia. She has created a barrier around her cookie with my bag. Good for her.

Our food is ready. The beeper goes off. Yikes! Did you know, some Panera’s bring you your food and some want you to come up to the counter? I forget how they do it at this one. We wait long enough and they eventually bring our plates to us.

Time to eat. I have a decision to make. Should I let Sadie eat by herself or feed her so we don’t make a huge mess? Today, I take the easy route and choose to feed her. More staring. After all, Sadie’s disability is invisible, so people see me feed a 7-year-old with a spoon as I try to block her other hand from grabbing and, keep her from jumping in her seat. I don’t dare order food if I am alone with the girls. It’s impossible and not enjoyable. I start to question the whole outing… why didn’t we go through the drive through, order for rapid pick-up or any other option? I quickly remember… because I will not limit Sadie to a life at home. And the day we start limiting her, is the day we lose. My husband, Brewer, and I will continuously work to maintain our ability to go out in the community. So I guess… we will see you at Panera!”

‘People often ask me what is the hardest part of having a child with autism. The irony is, it’s not the child with autism. It’s my other child.’

This story was submitted to Love What Matters by Regan MacKay Lister of Hummelstown, Pennsylvania. Her 7-year-old daughter, Sadie, has severe autism. Lister has been writing a post a day on her This is Autism Facebook page explaining her family’s life with autism in honor of autism awareness month. 

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