I am very aware of both Autism and Down Syndrome. Both with my work. And my day to day life. One special need, I chose, persay. One, I didn't.
My oldest, as most of you know, was diagnosed with high-functioning Asperger's a few years ago. I honestly have mixed feelings about the reality of this diagnosis...but I know for sure we deal are dealing with some spectrum issues, sensory issues, and behavioral issues--most days. So to make you "aware" of our daily dealings with Autism, here is my explanation through experience.
Because my child has no perception of social cues...as in what is socially appropriate to say, do, wear, or believe, we live in a constant limbo of what will she do next.
- Possibly answer the door when the mailman is dropping off a package...completely naked...(because it is "hot" in here, mom)
- Or invite the girl in the checkout line who Leah has already given my phone number too, our home address, and her daddy's working hours too, to our house anytime...because the girl seems nice....and we can be best friends.
- Or constantly interrupt a conversation you are having with someone else...getting louder and louder and in your face until you either explode or have to stop conversing and step aside with your child to ask them to wait to speak.
- Naps are non-existent. Don't plan to sleep. If her eyes are open, so are yours. Even if you are dead asleep, or specifically tell her you are lying down to rest...or even lying down the other 2 "littles" to rest. DO NOT DISTURB on the door. She doesn't get it. If she has something she needs, at that moment, it is of highest importance....you will be awoken. Or the "littles" will be woke up immediately to hear or see what is on her mind.
- She lives in an adult world. In her mind. She is one. She doesn't comprehend peers and what it means to interact with people her age. She will be at a tennis camp, I will drop her off and come back only to find her not participating in tennis any longer--but sitting with the other mom's in the bleachers-asking questions.
- She feels emotion 10x more dramatically than you and I. Anxiety. Fear. Sadness. Anger. Excitement.
- She can empathize with people better than anyone I know. She can sense an emotion in a person long before that person may know it or even admit it. And she will cry tears and be sad along with her teacher who is sad, and expressed her emotion one day. And she won't forget it. Guarantee she will be affected by it. And want to act upon it. And will sit with you until she feels you are happier.
- She will cry tears over a hurt animal we may have passed on the street. Or heard about on the radio. She will bring it up months later, long after we have all forgotten it, still near tears at the remembrance.
- She gets excited weeks before an activity that involves her. So much so, she can't contain herself. I mean boiling over the top bubbling out of her ears, can't control it, emotional high!! And nothing or no one can stifle that. It is a beautiful and frustrating thing, all at the same time. It is her constant focus. Constant flip-flop in her mind, play each possible scenario over in her mind again and again until the day of...
- She can remember what our waiter wore on her feet, 3 months ago at a fast food restaurant. She can tell you what the entire school's population is and name each person by first name. She can memorize anything and everything.
- She can't properly digest sugar. Or pop. Or junk food. Or dairy products. Again, she is sensitive. Therefore her body is sensitive. She loses all control upon digestion of these foods. It is a real problem. And struggle on our part. Hard to pass up, and see your child have to pass it up at every party, get together or play date. But the aftermath is real.
- She has to be on a schedule. It's 8:30 pm bedtime. Or else. Or else you are up all night, as she is thrown off by the change. As she is awake early, before everyone else-already overwhelmed by the emotions of the day.
Her world is completely "as is." As literal as it comes. Nothing figurative. Nothing "maybe." It's black or white.
- If you say, "hold on a minute." She will count to 60 and ask what she should hold onto.
- She is as Amelia Bedelia as they come. Tell her to put the towels upstairs...she will sit them on the first step going upstairs.
- Sarcasm is not on her radar.
- Everything in her life is on the clock. Get in, get out. Look, see, do. Done. Check it off the list. Moving on.
Yet, she is remarkable in so many ways. Good and bad. She challenges me everyday. Many days I lose. And lose bad. But when I step back and count my blessings. I realize how much she has opened my eyes to thinking, believing, looking, and living outside the box. Outside the norm. Possibly questioning why as a society we do certain things...things I'd never think to question. It's kinda hilarious sometimes. When she stumps me with a "why do you do that?" question. One, I don't have answer for, in all reality.
Or how she requires me to slow down. To pay attention. To be by her side. Or to remind me how strong she is. How her sensitivity, zeal for life, and empathy will play out to help people someday. How God can use her. How He already is, to change my heart.
So I guess, this is me making you aware. Aware of the beautiful struggle it is somedays, to know a child on the spectrum.
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