Foot in Mouth Disease… No Remission So Far…

I just had one of those parenting experiences that makes me want to hide. I don’t know how to describe it, but I’m going to do the “analysis paralysis” thing so that people like me who don’t normally share might get to have their voices heard.

As I’ve said in my intro, all my kids are special needs. To make life more challenging, all the needs are hidden. What this means is there is nothing physical to indicate to the ordinary passerby who doesn’t know them that their brains are wired differently. So, when any of the girls opens her mouth to speak, it becomes a double whammy–people who don’t know her are shocked because it’s not “normal” AND they didn’t expect “not normal.”

I struggled with this early on in their lives. My still, small Voice and I had many interior conversations. Eventually, He won. He and I worked on areas like my pride and expectations  (His, mine, and society’s) and His calling for them and who I was to Him and how I was to express that.

Because of their brain issues and my character issues, one of His challenges to me has been consistent and authentic speech and action from the sanctuary to the boardroom to the school IEP room to the bedroom. In the moment, I am asking Him for His insight as to the source of the issue and dealing with the issue in the moment based on His instruction.

It’s resulted in some beautiful moments, especially when my connection with Him is close and I’m focused on Him and His plan.

Today was NOT one of those moments.

As part of her diagnoses list, my youngest child is on the autism spectrum. Her old diagnosis was Aspergers. With the release of the new diagnostic guidelines, I am not sure what her new diagnosis would be. This can be quite interesting at times. This means she is very functional in some areas, like reading and remembering information and following rules, and very non-function in others, like appropriate social interaction. This has been very embarrassing at times because she sounds intelligent and arrogant and mean and childish all at once; the thing is, she’s really kind and merciful, almost a gentle giant, but you have to know that or you get a shock to your system when she speaks.

The last two to four weeks have seen her have a tremendous physical growth spurt. It is to the point where all that fits her is her skirts. She prefers long skirts because, quite frankly, in her words, “My body doesn’t like it when I shave or use the funky, loud machine.” (Translate epilator for the rest of us.) To make her life easy, when we purchase clothes, I often get plain tops and patterned bottoms. This overcomes her sometimes unusual sense of what she can pair together as an outfit.

She does look very Mennonite in it. For those not familiar with the Mennonite faith, the easiest way for an outsider to describe it to another outsider is that Mennonite is Amish light. I don’t personally believe, but I also refuse to criticize. I don’t agree with the rigid expectations for women, but I respect tremendously the courage to stand out and look different and be different in a culture that almost demands conformity.

We are walking to the local Goodwill because jeans are something that clearly can be gently used and no one should care. She is walking beside me easily with her long legs, but not yet fluidly because she cannot adjust quickly to how rapidly her body is changing. I’m smiling inside because she does look a little Mennonite with the sneakers and long skirt and modest top; the only thing missing is the head covering.

We enter the store, and she is magically drawn to the skirts. I re-direct her, telling her, “Not today dear. Besides, those are a little too long for a child your age. You’ll look too…”

She responds, “Mennonite?”

I turn and see two very beautiful young Mennonite ladies, probably about five years older than my daughter.

I feel the need to turn and hide, run away, disappear. I’ve tried to never condemn a member of another Christian faith, so I’m not sure where she got that. I do use the Mennonite as an example of how to be modest when culture doesn’t support it, but as far as I know, I’ve not ever said anything negative. Always quick to recover as I learned embarrassment only kills my pride, I added, “Not that there’s anything wrong with that. It’s just not you.”

I feel the pressure leaving, but I can also feel them looking at each other. I start to rapidly redirect, but my child is mesmerized by the baby. I’m feeling a little scared because my daughter used to be only interested in fairies and she is now zeroing in on the baby intently with that hyper-focused stare that most who don’t deal with kids on the spectrum call “creepy stalker.”

“Is that your baby sister?” Again, I feel an impending need to disappear.

I just say, “Oh, honey, it’s probably her baby daughter.”

We finished our trip, and the Goodwill staff was not as bright and cheery as they usually are. The body language was stiff, cold, and callous. With my wounded pride, I’m mentally calculating all the things I should say.

The inner Voice just stopped me. I was taken back to how I was before having special needs kids. I used to look at meltdowns and call them tantrums. I used to mistake exhaustion for laziness in dealing with poor behaviors. I too used to play judge, jury, and executioner for stupid conversations being held in public. I would also turn to my friends, whispering like the roar of a jet engine, analyzing and criticizing and figuratively pounding my breast with self-righteousness.

So what is the point of this little exercise in self-humiliation?

It’s all about context and perception. Perception changes depending on how close you are to a situation, how much you know about the situation, how well you know the people in the situation, and whether anything in your experience banks is similar enough to help you look at the situation from more than one perspective.

It’s also about courtesy and respect. If I want people to stop staring and stop asking bizarre questions, I need to stop gawking and asking bizarre things. If I want tolerance, I need to show tolerance. If I don’t like the private conversations that are just a little too loud not to be overheard, I either need to live out loud or wait until I am in private to express the inappropriate AND I need to teach my kids how to do the same.

But I also need to be aware that tolerance and courtesy and respect are defined by the situation. What may be acceptable in one culture or group may not be acceptable in another. What I define as open, honest, forthright parenting may be viewed by another as giving too much information and too much social responsibility.

So in closing, I do apologize to that Mennonite family. I truly do respect how you live, even though I don’t like the roles that you permit for your women. I ask the workers to forgive me for not painting the background of why my child is the way she is but I figured you were close to closing time and would rather have dinner than a neuropsychology lesson.

As much as I didn’t like having all the eyes on me when I was a child growing up, it was a good thing. I learned that motive is not perceived by the human eye but by the Heart of the still, small Voice. If I want others to feel comfortable asking about and getting to know the still, small Voice, I need to consider how my words and my actions make others feel. While I cannot water down truth, I can try to sweeten my expression of it so that when mistakes are made the sincerity and love will communicate far more than the error.

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