Diagnosis labels shouldn’t matter to people we don’t know…but they do. I wish I was able to walk into a store without having to explain so much as one of my son’s conditions…but I can’t.

If you’re a parent of young children, you know…no matter how much you treasure your kiddos, store shopping with them can be an adventure even under the best of circumstances. Imagine with me for a moment that you are the mother of a young child who has developed an extreme anxiety of people that can cause vomiting if they become too close, or at the sight of more then a few individuals several feet away causes hyper-urinating and/or anxiety poos that flood out of his moments ago dry diaper.

Or who gags and vomits sometimes at certain smells, like cigarette smoke as you’re walking in or the smell of common commercial cleaners to be found anywhere cleaning recently occurred. Who can’t tolerate noises you consider normal without melting down into hysterics. Who wants to violently clear the shelves of everything he sees because it’s visually too overwhelming to him…assuming you can wrestle him in there to begin with. Who tries to flee using all of his strength. Who doesn’t respond to the word stop.

I feel like an infomercial here, yet all I can say is “but wait…there’s more!” Your kid is twice the size of a typical child his age, you don’t have anyone available to help you out most of the time for a variety of reasons, you’ve got health problems of your own, and you have another young child asking for things or reacting to what’s going on while you’re trying to scrub down a shopping cart and store floor or manage any other of the above crises.

That was my world four years ago this month. So…what would you do? As a shopper, I tend to be very loyal. I had already been an Amazon customer for years for my crafting books (seriously, they have the best prices on those), so that’s where I did most of our shopping for the past four years.

As many of you know, we’ve been involved in years worth of therapy work, focusing on sensory integration, desensitization, Applied Behavioral Analysis (ABA), and Neurological Music Therapy (NMT) to address these challenges. While all of those things helped and were integral to the successes we’re having today, and I’m profoundly grateful for the guidance of everyone involved in what I have been doing, Tony was stalled at under a minute of tolerance for most stores as recently as 6 months ago until we integrated NMT into these outings, and then we started smashing through tolerance time goals one after another. It’s one of the reasons I am so passionate in my support of NMT, and Tony’s totally awesome music therapist Emily will contribute a future guest post to explain how NMT is used with the treatment of neurological conditions.

While our ultimate goal was to get into the stores more, I wasn’t planning quite yet for that to be so full throttle. Many of you have heard just a wee bit (think epic rants) about our break up with Amazon-and if you have, breathe easy…this version for everyone else will be so short it’ll put cliff notes to shame. Amazon sent me an e-mail saying they thought I was writing reviews for compensation. I wasn’t. I got upset (definitely upset), they did ultimately try to offer me a $100 promotional credit as well as giving me our year’s worth of prime free to make peace with me, but it came with a refusal to provide details or an apology from the appropriate department (either would have fixed things for us).

I don’t care about their money or discounts, I care about how I’m treated. I’m not here to pick a battle with Amazon, because I’m sure they have some pretty cool people working for them. But their handling of this situation was very upsetting to our family, so this top 500 reviewer issued one last review by canceling all things Amazon and finding other places to get what we need for our family.

I prefer to be about moving forward, and saw this as a glorious opportunity to expand Tony’s public therapy outings. Those of you who know about the sheer triumph that was our family’s nearly 2 hour Zoolights trip with Tony happily strolling his way through it all and Emily providing NMT support may be thinking this transition to more store shopping isn’t as big of a deal. Well, not quite. My post Amazon world has some difficulties.

Anxiety poos are still a problem sometimes, and since our son has been using the potty for the past year, it’s even more of an event then it was with diapers. Lysol, I love you! And sometimes he gets upset, drops to the floor, and starts trying to bang his head on the ground. Then there was the time I had to give him a shoulder ride out of our local Costco because he wouldn’t stop dropping his pants and chuckling while he grabbed his junk.

We have fleeing, kicking and whacking at my chest occasionally when I stop him from doing that, rolling down the aisles, and crying/stomping loudly for a few seconds when he gets upset. Any type of wait is a four letter word, and he likes to go one direction…his. Both Emily and Tony’s fantastic ABA team will be headed out on an upcoming outing with me as we continue to work at ways we can help him with all of this.

I do everything I can to be respectful of others when we are out working through all of this. Usually I can get him calmed down in seconds, and if not, I remove him from the store. And I do my own cleaning. But still, I have often had people following me around with looks of concern. Some people even look like they’re trying to figure out whether or not they need to call the police to report a kidnapping.

You may be asking, if he has such struggles, why not just leave him at home? Well, aside from the challenges finding a baby sitter presented up until recently, if nobody ever helps him work through these things, he’ll be locked into a future where he can’t ever leave his house. And that is no kind of future at all…for anybody.

I may by fearless about trying to help my son, but in the back of my mind I know. While it’s not happened to me yet, parents of kiddos with Tony’s types of struggles get the police called on them sometimes. I know when people see me grab Tony when he’s freaking out it’s easy to assume the worst, because his disabilities aren’t visible to them. But if I let him down, something’s getting trashed, someone could get a cart shoved into them, or he could get hit by a car he’s not noticed as he’s trying to run toward something.

I know there are some parents who object to the use of diagnosis labels. While I understand that, I have unfortunately found people are almost always much more tolerant and understanding when they know there’s a medical reason for what is going on. I usually go with his Autism diagnosis because it’s the one people are probably most familiar with, and I like to wear a shirt referencing it because when he’s loosing control, it’s not a great time for me to verbally educate. I had to paint a few extra to help me face my post Amazon world because I was getting followed pretty much every day I wasn’t wearing one. No one follows me when I am wearing one. No one.

For all of the ways Tony’s symptoms have publicly played out in the last few years, only 5 people have ever asked me if I needed help. I personally think that is the best response, so I’d like to respectfully recommend doing that if you are ever out in public, and you see a parent who’s dealing with a kiddo who is screaming or struggling, or you see something you don’t understand. Then, after talking with the person and asking if they need help, if you think a kidnapping is really occurring, feel free to pick up your phone.

Most of the time parents may turn you down when you ask, but sometimes, they may take you up on it and mentally shower you with gratitude. I will forever be grateful to the woman in Costco who asked if I needed help and stopped to pick up my bag while I was helping Tony this past summer. Nobody should ever have to be afraid to help their special needs child develop public skills in the community. Nobody.