Some days when Tony and I are tackling our list of stores, he’s having a hard enough time getting through the environment that I end up feeling like a thoroughly punctured tire by the time we are done. And other days, he’s doing absolutely amazing and things are going so well I feel like there’s a choir and an orchestra melding together in a crescendo of triumph.

We were having such a day a few weeks ago. We were going through our local Sprouts, where Tony and I have often been a weekly presence bringing varying degrees of entertainment (or disruption) for a little while now. This is a store he’s more familiar with (my initial attack plan for his struggles with stores was to spend most of the work in the beginning on places I needed to be often, such as Sprouts, and those are the places he does best in currently), but things don’t always go smoothly. On the day our beloved feline despot Dickens died, we went in there to get a comfort dinner for Hannah, and Tony (who had already had a very long day at our fabulous Vet’s office) pretty much flipped out.

But not on this day. He had used his computer to let me know he needed to use the potty, he’d waited patiently while I grabbed my Spry mints and gum along the way to said restroom, he wasn’t trying to sit on the ledges at the bottom of the freezer cases as I nabbed my Beyond Meat and Gardein, he was walking next to me, the trip had been melt down free, and he had been helping me put things in the cart. I do however, have to be careful what he helps with, because he doesn’t have the muscle control right now to put things in gently, rather they get tossed in with a bit more force then would suit breakables or things easily bruised.

I had just handed him a packet of carrots to put in the cart, which he did, and an elderly gentleman who was walking towards us said, “Oh, how great! You’ve got a helper!” To which I smiled and said “Uh-huh, I sure do!” Then he walked behind me and read the back of my t-shirt, upon which I had painted “Clean up Crew for my Autistic Rock Star”.

The gentleman in question then decided to catch my eye and said, “I thought you had a helper. Never mind, I guess you don’t…”

Oh. My. Gosh.

He did not just say that to me after my son was being a “model citizen” as Agent Cobra Bubbles would say. He did not just try to negate years worth of hard work for both of us that made that moment possible for Tony and take away the credit for his helpfulness. Okay, yah, he pretty much did. Didn’t he see what my son did, and is that not what helping looks like?

Sometimes, I have a great educational comment that just rolls off the tip of my tongue like I’ve been drinking deep from the “feeling the love for my fellow humans” kool-aid. The best I can say on this occasion is that I managed to stay calm and not say anything hurtful as I looked at him, flashed a smile that was a little on the sharpened side, and said “You know what? He’s doing the best he can!”

Sometimes Tony does things currently when he’s out in public that are more unusual looking or genuinely disruptive for brief periods of time. While it still hurts when people comment on those occasions because I know both Tony and I are doing the very best we can, you know I can understand it more…sometimes we do stick out a bit. Many people still don’t understand the struggles someone can have with Autism alone, much less what the rest of Tony’s conditions add to the mix. I unfortunately have to confess I have been unable to find much within me though that can excuse what the gentleman in Sprouts said to the part of me that wanted to apply my warpaint and tell him exactly what he could do with his remarks.

There was another occasion several months ago at this same Sprouts. Tony’s public struggles were more on display for this outing. He had tried to flee many times, had cut in front of a few people, and he tried to put some apples in another shopper’s cart as a diversion for me so he could try and make a break for the less crowded side of the store without getting stopped. My sweet Hannah had been with us for that outing.

Finally, towards the end of the shopping trip I plunked him in the back of the cart (he’s been too big to fit in the front for a while). Sometimes he’s happy with that, other times he tries to instantly climb out. He had asked for bananas on his computer, and once the cashier had rung them up, I grabbed one before the bagging clerk could pick them up and started working through helping my non-verbal son to try and make some of the sounds for the word we were using.

And this is the moment that clerk chose to say, “Actually, monkeys don’t eat bananas.”

I wish I could say it were otherwise, but seriously I am only human and doing the best I can in any given moment, so I have to report that the initial look I gave this particular person caused him to start stammering on his next sentence. And then after a few seconds I managed to find my proverbial shoulder angel and launch into a description of Tony’s situation and the therapy methods we are using to encourage speech. Hannah decided to give him a brief explanation of the eating habits of Monkeys, which can indeed include bananas if they are available to them.

As we drove home that day, Hannah was pretty quiet. While we were unloading groceries, she turned to me with a very sober expression and asked, “Mom, how is it that you are not miserable all of the time?” She began giving examples of things she knew I had experienced which she felt like formed a great case for an inability to find joy in life, and referenced as her capstone piece the comments people make to me about Tony.

I told her I try to find joy in the small things, and in the things that I do have. Getting to build a puzzle with her, or Tony gaining a new skill. Right now, we’ve got a beautiful hummingbird with intense amethyst throat markings that frequents the aloe flowers in our backyard…seeing things like that makes me happy, and I hold onto it and soak as much of it into my heart as I can.

Yes, sometimes people say upsetting things, and we are only discussing mostly my reactions here. I know they have left a mark on Tony that I am not fully able to comprehend yet, because while I can tell sometimes people upset him, he doesn’t have the expressive language yet to do more then say “I feel bad” on his computer.

I think much of the time they don’t really mean to be offensive or hurtful, they just don’t understand his situation. I personally have found so many ways to get both my feet into my mouth at the same time without meaning to. Seriously, these toes need frequent flier miles! However, I can not deny that sometimes people are being deliberately mean spirited, and certainly that can leave deeper emotional marks. I ended up buying a punching bag so that I could work my way through some of all of that without loosing my composure and verbally ripping people to shreds on the spot.

That helped, but what helped me the most was to firmly decide to not let these incidents plunder my happiness. And sometimes, I spend time praying to recognize the positives in others that Heavenly Father sees so that I can work with those who have made such statements when the mother in me would rather tell them off and be done with it. I think the best thing any of us can do to heal the negativity is pour on the love, but it has to be sincere (otherwise people can still see us mentally sharpening our knives so to speak). Sometimes I can’t feel that right away and I have to struggle with myself a bit, long after I’ve tried to educate someone about Tony’s disabilities, turned my back, and walked on.

We can’t help each other move forward if we’re always focused on the past, or on the negative parts. So I’d like to leave you with some positives experienced in that same Sprouts. The day Dickens died? Another customer approached me with a genuine look of love and concern and asked me if I needed help…she was one of the initial 5 referenced in one of my previous posts. And just this past week at Sprouts another parent approached me, having seen the same shirt that provoked the other customer’s more hurtful commentary, and mentioned she too had a son with Autism, complimented me on my patience (Tony was doing a bit of fleeing on this trip), and asked if I needed help. I love it when people offer to help, though I rarely say yes. And she was super kind, though I admittedly could have been a better conversationalist…I’ve had a sinus infection for over a week now, we’re lucky I was coherent 😉

Every other employee interaction I’ve ever had at that Sprouts has been just fine, some of them were even awesome. For me, I don’t want to loose sight of those positives by focusing a lot on two bad experiences I had there, hurtful and upsetting though they were…but sometimes, I still can’t help it.

Sometimes words can cut clean through and leave each of us feeling gutted. Focusing on the better stuff can stitch us back together again…if we let it.

A Note About the Pictures:

Part of the way Autism has touched Tony’s life is that if he’s familiar with and doing well with one store location in a chain, he’s only doing well in that individual locale. Different locations usually have slightly different appearances (for both the store front and the parking lot) and as well as switched up aisle and product layouts, and that makes it harder for him to feel like he understands how the environment is going to work. This photo was taken after a recent trip to a Sprout’s he’s never been in before, which felt stressful and a bit scary for him and he reacted accordingly.

I was very proud of him, because he was able to hold in his anxiety poo until we got him to the potty, but we had to run straight there. I had to briefly take him out of the store because he got very emotional about not wanting to be there, and once he was calmed down, I had to carry him back in because he refused to ride in the cart or walk on his own. He upset another customer by nearly running our cart into theirs because he tried to steer us outside once he was on his own feet. My muscles kept the collision from occurring, that’s part of what they’re for 🙂 I took him to an aisle with his favorite cereal boxes thinking seeing something he loved and recognized might help him self-soothe a bit, which it did as he sat and looked at the boxes, he just didn’t want to get up and leave the aisle once other customers joined us so I had to lift him to the next aisle so they could get their stuff. After we finished paying, as a motivating way to keep us in the environment longer, I let him climb into the back and eat an orange.