Man! I have been SUCH a grouch today. GGGRRR!!! I'm tired and worn down from the bake sale, all four of my kids have been sick (and were home sick for two days), it's rainy here, and I haven't had a break in awhile. Wah, wah, wah. Poor me.
Took a little outing with my youngest two girls today. 4C has a severe peanut allergy, which requires follow-up periodically with her outstanding pediatric allergist. So, I got 4A and 4B on the bus in the drizzle, inhaled my coffee, got 4C dressed for ballet but packed her school clothes and snack and "homework," grabbed my store list and took off, like a shot. Pulled into the parking garage at the hospital. Grumble, grumble, grumble. So much to do. Cold and wet out. Wah, wah, wah. All of the sudden, 4D starts running and giggling, holding her older sister's hand to accompany her to her doctor's appointment. That snapped me out of my whinefest pretty quick.
I had simply put that 18 month old in the car this morning, never told her where we were going, probably forgot her snack and drink but remembered a bedraggled and beloved baby doll, pulled her out of the car, plopped her on the ground, hollered at her to hurry up, and off she went. When 4A was that age, I couldn't take her ANYWHERE, and I really do mean anywhere, without a full-blown hour or so of screaming and tantrumming. Whether we were going to the doctor, the grocery store, the toy store...didn't matter. The very mention of leaving the house sent her into a screaming fit of epic proportions. I know now that leaving the house meant a WHOLE host of unknowns (sights, sounds, smells, and activities) that upped her anxiety, not to mention that there would be overhead lighting and noise and she had to wear clothes and shoes. Too much. For her and for me. For YEARS, I would spend days planning out the shortest and simplest of trips, making sure that I had everything ready, that I was absolutely willing to muscle through no matter how hard and how long she screamed, and that I was prepared to shrug off the stares. We tried visual picture schedules of our stops, we tried social stories about what to do and what to expect, we tried incentive systems. Nothing worked...for a LONG time.
So, seeing that sweet, chubby-cheeked youngest girl of mine skip and squeal after her sister, happy just to be along and be going somewhere, made my heart soar. Look at how happy she is, just to be there and with her sister.
Next, the nurse calls 4C back, and, while I'm wrangling 4D, the nurse, in about 22 seconds flat, takes 4C's temperature, height, weight, and blood pressure. 4C does everything the nurse asks without complaint. Nurse is complimentary to her and me on 4C's behavior. She gives 4C and her sister THREE STICKERS EACH for being so "good."
Second reality check of the day. 4A spent a LOT of time in doctors' offices at that age. She has a congenital heart defect, which required EKGs and echos. She had a bladder defect, which required voiding cystourethrograms (VCUGs) and kidney ultrasounds. She saw developmental pediatricians, neuropsychiatrists, therapists, and behavioral psychologists of all kinds for what we know now was/is autism. Holy shit! What a trip all of those visits were. If running to the grocery store to buy diapers and a loaf of bread in 48 seconds elicited screams to the level of near hysteria, you can only imagine what doctors' offices produced. EGADS! It was so bad that one radiologist even wrote on a report that 4A refused to void for TWO HOURS and was "inordinately obstinant and oppositional." Real helpful, asshole. Tell me about it.
One time (at band camp...I couldn't help myself), we took 4B to an emergimed-type place where they took a rectal temp. For MONTHS, 4A would SCREAM, put her hands on her ears, close her eyes,and shake her head while repeatedly yelling, "They're not touching my butt; it's not my turn; They're not touching my butt; it's not my turn" (over and over and over and over) every time to went to a place with overhead lighting. Target, the library, the grocery. Such fun! And, SHE wasn't even the one who had the rectal temp taken.
Every doctor and nurse that we saw, save 2, were noticably and understandably irrirated and perhaps overwhelmed by what 4A presented in their offices. And, they treated us differently because of it. It's amazing how friendly and nice office staff are to you when you have the cooperative kid. Walk back in that office with the uncooperative one (and I have...MANY TIMES), and it's a whole different story. Like I somehow caused the uncooperative one to act like a maniac, any more than I caused the cooperative one to be an angel. Give me a break.
So, that was reality check #2 for the day.
We whip out of the doc's office, run to ballet class, run back to the car in the rain to slip out of the leotard and into school clothes. Start to eat sunbutter sandwiches and cheetos in the car on our way to Target. Because, I'm just crazy enough to try and cram a 45 minute errand into a 15 minute spot in an otherwise insane day AND in the pouring rain. I'm grumpily dragging my ass and theirs through the aisles on a hunt for Spongebob mouthwash because that is the ONLY kind we can use without whining around here. Wah, wah, wah. And, then I heard it.
Now I didn't really hear the screaming. I guess I probably actually did but mother of 4 and mother of a kid with ASD that I am, I promptly tuned that shit right out. What I did hear was the lady next to me. She said, "My goodness. I can hear that child screaming from across the store for almost 15 minutes now. I wonder why his mother can't get him quiet."
This third reality check, friends, actually froze my heart.
I have been that mom. Not the one who commented but the one with that screaming kid. SCREAMING! Flapping, covering ears, perseverating, repeating, kicking, screaming. In a store. The whole time we're in that store. While everyone stares. In my head and heart, during those trips, I was sort of in the zone with 4A, following the behavioral plan as best as I could in the moment, steeling my resolve to get through the damn list and haul ass outta there. It was always only once I got to the car, or more likely once I dragged myself to bed at night, that I felt those stares and those comments. They were so terribly hurtful.
At the time, I think those stares and comments (spoken or implied with "looks") were hurtful because I worried that people thought I was a terrible mother. Now that I know that my child has autism and that I am my children's mom (not a good one, not a bad one, just the one that they happen to have who's doing the best that she can in any given moment), I realize that those stares and comments hurt because of what they mean for my beautiful babies as they grow.
What those stares and comments mean is that different is unacceptable. Different is not okay. Being different is something you can control. Different is something your parents can fix. Different is sometimes too shameful to speak. Those things break my heart, for my babies, for our world, and for my beloved 4A. Because they are untrue and because they hurt.
So, I did, in Target today, what I prayed a mom would do for me way back when. I turned to that lady, smiled with genuine kindness and sincerity, and I spoke the truth. "I would imagine that the child has autism or a sensory processing disorder, and I bet her or his mother is doing the best she can." And, I walked away, quietly whispering to the two typical girls in my cart that life is hard for everybody, that everybody has trouble with something or things, and that everyone needs understanding and kindness.