Tuesday, July 19, 2011

What do people see?

What do people see when they see me walking with (specifically) Rachel and Simon? Do they see a mom with 2 kids? If we are having an "A-moment", do they think how could I allow my children to become such spoiled brats? Or do they actually see the autism? Can someone who has never seen me or my children before recognize the struggle that I must mentally prepare for every time we leave the house? I always feel I have to explain myself or their behavior away, even when things aren't so bad. I feel I have to prepare everyone for the imminent breakdown that is coming so they don't see me as "that terrible parent". I shouldn't care about this so much. I shouldn't anticipate the negative moments.

But I do.

They happen all the time. Things aren't as bad as they used to be....we have learned several tricks over the last couple of years (gummy bears and cookies are probably our most successful ones). When I would pick Daniel up from school this year -- I was known as the "Gummy Bear Mom" because I always had a pocketful. I would hand them to Simon periodically as a reward for good behavior, or when he asked me appropriately. Most of the Moms around me, knew us by the end of the year, but what did they think of my parenting techniques before they came to understand our struggles? And, again, why did I care?

Today, I will be picking Daniel up from his second day of camp at a facility Rachel and Simon have never been to (Hill's Gym). It's a gymnastics facility, similar but much larger than the familiar "The Little Gym". Yesterday, when I picked him up, Kevin was with me and he stayed with the twins in the car while I collected Daniel. Today, he's back at work and I have to do the job on my own. I can see it now. Rachel is going to try to get into that gym. Simon is going to just stop in his tracks, causing me to drag him inside the facility. Because of these fears, I'm going prepared. The leashes are in the car and I'm going to put them on these two before heading into the building. That's going to cause it's own battle and we'll already be on a losing path before heading in. But the need to contain them outweighs the possibility that they will behave when they get inside. I'm actually almost hoping for rain so that I have the excuse to keep them in the car while they bring Daniel to me.

And what will these people think of me? These two look like they are 6 years old at first glance because they are so tall (even though they are only 4.5). 6 year olds aren't led by these leashes (oops....I mean harnesses) -- they are designed for 2 year olds. 6 year olds aren't given gummy bears every few minutes for good behavior. There is no parent that will be there today who knows us. No one knows that we are an autism family. No one knows that my kids behave more like 2 or 3 year olds despite how they may appear at first glance.

People have asked me what autism is like on a daily basis. This is probably one of the better examples. This is what it feels like. Knowing that you are about to step out into the world with children who one on the outside would think should know better, but don't. Knowing that, unless they are familiar with autism, if we have an "A-moment" people will probably be whispering behind my back once they assume I can no longer hear them (if I'm lucky -- there are some who don't care if I hear or not). Knowing that others consider me a sub-standard parent because of the behavior of my children, even though in many cases, it is beyond my kids' control or understanding.

It really shouldn't bother me. Not after all this time.

But it does. And it probably always will.


  1. This is my biggest struggle. I stay home so we don't have to deal with it. Every time we are with anyone else our stress levels go through the roof. I hate dumping out their last 6 months of evals and therapy as an excuse to people I don't know and will never see again. Who are they to judge and why do I care? Because people do judge, they judge my kids, they judge us and they make assumptions that are not true and it makes me crazy that someone will take a moment and decide i am a bad mom or my boys are unruly kids.

  2. I think that's one of the hardest things to deal with. Autism parents are probably some of the most diligent and loving parents out there, yet we are the most criticized and dumped on. I'd like to tell you that you'll get used to it or learn to harden yourself against it, but even after nine years, I'm still not there.

  3. Follow-Up: I chickened out today. I realized while I was in the car that I had forgotten the gummy bears at home. And, when I picked them up at camp, Rachel was already practicing her body drop form. I just couldn't deal with it. So, they told me for the rest of the week, they'll bring Daniel out to the car if I just somehow let them know I'm there. I'm VERY appreciative, albeit quite embarrassed.

  4. oh gosh I totally feel your pain. I can't tell you how many times we've left libraries, playgrounds, etc etc with my tail tucked between my legs because I know other people are talking about us and we had the inevitable A-moment. Before age 3, it was just one twin with autism--- but since age 3 with Reena's behavior getting more and more and more spectrummy.... it's slowly become RIDICULOUS to go out in public with these 2.

  5. You're right. It does bother us (parents) and probably always will. But we go on...one day at a time--sometimes one moment at a time.

  6. It bothers me too and it shouldn't. This was a great post and it cut right to the heart of how hurtful scrutiny and judgement really feels. I say every week that this week is going to be different and I don't care what people think...but I always end up feeling the burn of it. Keep being the wonderful mom that you are and just know that no matter what people think or say, you know you are doing all you can do.

  7. Stay strong. My crew is 15 now...it will get better. Some days will just suck though. You certainly will know who you true friends are in life and that is a gift. Sending hugs to each of you!!!

  8. Though I hate to say it, it is nice to know that I am not alone...I stress so badly when I take my younger 2 kids out in public (1 has Asperger's/Bipolar Disorder and the other Down Syndrome). On the one hand, people think the elder of the two is a spoiled brat and they think I am too hard on my younger because I have to get in her face to make her mind. It's a battle at times, so I try to only have to take one out at a time.
    Hang in there...you aren't alone in this.

  9. This post makes me think. I am an elementary school counselor. Your blog is educating me and helping me be more empathetic. What is an appropriate response when a person sees that a Mom is struggling in public? I want to communicate that I am not judging her. Is it best to simply ignore? Just hate that it is so hard for families when they are working so hard to parent. They don't need judgment on top of it!