When Do You Stop Caring?

Yesterday, a mom with a recently diagnosed little one asked me, "When do you stop feeling the need to tell everyone they are autistic? When do you stop caring if everyone knows?"

I'm sure that varies according to each person on this journey. For some, they may never care at all and tackle everything head on, not giving in to the societal pressures of perfect parenting. Others may never be able to live a life without feeling like they have to warn everyone. For me, it took about a year to stop.

I can remember feeling so self-conscious walking Emmie into her new 3 year old pre-school classroom to meet her teacher for the first time. I prepared a lists of her strengths and weaknesses and provided the teacher with a tool box of strategies and tricks to help her manage any negative behaviors that could occur. I felt like I was doing the responsible thing, but it wasn't really received that way. Emmie became a "difficult child" immediately from day one in her classroom. When Emmie didn't feel loved and accepted, she acted out. I couldn't help but wonder what everyone there must have thought. "Do they know she's autistic? Do they know she's not just bad or spoiled? Do they know what she has to go through every day?"

I wanted to be with her all the time to explain her behavior to other people. I wanted them to know that we were good parents and that Emmie is an amazing little girl; she just sees and processes life differently than most people.

If we were out to eat, I'd worry about her not sitting still and would have to request a booth so that I could contain her for the duration of the meal. I'd worry about the stares when she'd become loud, or start a meltdown because I accidentally put her straw in her cup for her - she likes to do it herself. I just knew people were thinking about how much of a pushover her parents were. I'd been there before, judging other parents, looking at others and rolling my eyes at there "spoiled" and rowdy children. I ache to go back and give them a smile or an extra coloring pack out of my purse instead!

If I could have, I would have announced, "Excuse me everyone, my daughter is autistic so please keep that in mind as you dine/play/talk with us today!" No matter where we were, it would have instantly made me feel better.

A lot of the time, I'd just stay home. I'd isolate us from anything bad happening. It was really lonely.

So, when did I stop caring about telling others?

I switched Emmie to a new school. I went in to meet the teacher and started "preparing" her for Emmie's arrival. I went through a list of what sets her off, what we do in reaction to it, and how we avoid it in the first place.

Her teacher simply looked at me and said, "What's she like?" I was confused because I'd been telling her.

I repeated, "Well, like we already said she doesn't like it when..."

"No, no...I mean...what's she like? You've told me all about what you think her struggles will be but not anything about what she's like?"

My heart sank. She was right.

My baby is beautiful. She is a girly-girl. She wants to wear a dress every single day of her life. She loves bows, jewelry and make-up. Everyone is her friend. If she sees random kids at the park as we drive by she yells for me to pull over because there are friends at the playground! She loves to sing and dance. At home, she "cooks" for us and brings us endless amounts of yummy play food. She loves her babies. They all have a name and they all need a lot of attention or they will cry non-stop. She is extremely smart. She knows all her upper and lowercase letters and can count pretty high for her age! She would read all day with you if you let her.

There is more to her than her meltdowns, struggles and differences. Her teacher saw this. They didn't have any trouble with her the entire year.

We have a lot of families and children on our street. When we first moved there, Emmie was at a difficult stage and couldn't talk yet and really just roamed aimlessly and had several meltdowns a day. She couldn't play well with others and honestly I was embarrassed of her behavior and always worried about what would happen next. I keep her inside and allowed her to play in our backyard. I knew it was only a matter of time before this wouldn't satisfy her and she'd want to be outside with the other kids. Because of this, I also hadn't formed any relationships with the other moms on the street.

One day, I couldn't hold her back any longer and she ran out to join the children. She had a blast and my neighbor called me over to talk with the other moms as the kids played. Of course it didn't take too long for Emmie to have a meltdown in front of them. Emmie has made significant progress with meltdowns, but they still happen from time to time. I had to carry her off kicking and screaming. Naturally, I worried about what the moms were thinking. Then I heard one of them quietly explain to her child, "She's okay, she just needs a break so her mom is taking her inside. We'll see them tomorrow."

They'll see us tomorrow.

Never underestimate the kindness and patience you're teaching your children.

Emmie is not "different" to her friends in the neighborhood. When she's struggling, other moms explain to their children that just like they need time to decompress sometimes, Emmie needs that time too. And it's okay to take breaks and come back out and try again a little later.

I stopped caring about telling everyone when I realized this world is full of good, kind, and compassionate people. People that love you and your family, no matter how chaotic your mess can be at times. They have their own messes that are similar or different to yours. They offer you grace and love and sometimes a few moments to gather yourself before you lose your mind. They give you an understanding smile in the grocery store, or a reassuring, "You've got this momma!" in the middle of Target.

There will always be a Negative Nelly or two that make you doubt the goodness in others. What you have to realize is, their behavior and ugly comments say much more about them than it does anything about you, your child or your parenting. They will eventually catch up to the rest of us, and if they never do then that's on them. We can wait it out. We were built for it. Our children built us for it.

We are getting closer and closer each day to living in a world where we never have to hide. Imagine that world and create it for you, your child, and others like you!