So, what happens in families such as ours when one of the parents gets sick? I’m going to quote part of an email I sent out April 23, 2017 to a group of friends:
“Hello my sweet friends, I hope all of you are doing well! I’m slowly getting back to feeling normal. My cold turned into a nasty sinus infection because I wasn’t able to get as much rest as everyone else, being the person who took care of everyone else. I started Monday thinking, yah [sic], I’m feeling better, because Andy had covered me for some good rest time last Sunday. Only to feel like my cardio was too soon, and then when we went to walk Hannah to school, Tony decided he was done half way in and I ended up carrying him on my shoulders, and by the time I got home I was thinking. Yah [sic], too much too soon. I still have a bit of a cough from the stuff draining into my chest, but my sinuses are actually calming down. And I am super grateful for the bath soak recipe Kendra dropped off…that stuff was pretty awesome and it did help. But sometimes, there’s only so much you can do to hold your system together when the rest isn’t just something that you get to do.” (written by me 4/23/2017 in an e-mail to some friends titled “All the Little Things that Aren’t.”)
The hardest times were at the height of the emergence of Tony’s Sensory Processing Disorder symptoms, when I was also dealing with some more significant medical challenges of my own. Andy was in school and working full time, and we really didn’t have much assistance from anybody. A couple of meals (less than ten over a four year period) were brought in when things were at their worst, but for the most part I had to find ways to help both of our children without supports or days off spent resting when I was feeling ill. And for some time now I have been a needed helper for many of Tony’s therapy goals, since most public work is a two person job for safety reasons and there isn’t an insurance company in the land that will pay for that.
Emotionally, it can feel pretty dark to have limited options for self care when illness strikes. Even if I drop all therapy tasks on days when I don’t feel well (and every now and then if I’m feeling crummy enough I will do exactly that), I still have to provide a great deal of assistance to and safety monitoring for our little man and a full day in bed is almost never on option. Much of the time when I am feeling unwell, the best I can do is lessen my involvement. I might spend more time resting in the same room as Tony while I either read or watch videos on my phone. I will still play with him, help him, and do less active therapy tasks.
Of course, everybody knows on-line shopping can be the hero that saves the day in these types of situations, and certainly anybody who knows our family understands that I have a history of needing to do a fair bit of that. So much so, I got called out for it last year by someone who I personally didn’t know but recognized me from my frequent on-line purchases of therapy-related products. Even though Tony is doing a lot better in stores, many of the toys I need for his at home therapy goals aren’t available in our local stores and sometimes one of us gets sick and I will definitely still utilize the convenience of being able to shop with my computer. I find that it can be an enormous help- if everything goes the way it should.
This next bit is a word of advice mainly for other individuals or parents who need to do a significant amount of on-line shopping that may be planning to move into a more publicly visible advocacy role at some point: don’t get too involved with writing reviews. Everyone else, you still have my encouragement to write as many detailed reviews as you feel comfortable with- the home-bound shoppers can be benefited by your honest experiences with products that you purchased for yourself. But for the rest of you, please learn a few lessons from my experiences. Big corporations can accuse you of anything, don’t have to give you the opportunity to prove anything about your innocence, and can publicly say whatever they want about it.
Case in point:
Certainly I was a hot-mess emotionally for lots of other reasons when all of this went down and it may not have always been easy for me to articulate my primary concerns outside of the way this matter was handled. Initially, when Tony started collecting diagnoses, I wanted to continue to lead my quiet, mostly private and very social-media free life. As we started to get a clearer picture of the severity of his symptoms and I began experiencing certain things, I realized that the time would come when I would choose to become more involved publicly than I am now in advocacy for disabilities services. And at the time I received the initial allegation from Amazon, I had already agreed to let NMTSA use our family’s story as part of their fundraising efforts and was already in the planning stages for this blog.
I had plenty of faults as a genuine customer writing thoughts about our purchases, but none of my reviews were compensated. Proving I never took payments from anyone is an easy matter. Our income sources have looked pretty boring…and none of them come from me since Tony joined our family. I was not at any point allowed an opportunity to provide evidence disputing their claims and they refused to provide me any details as to why they thought I had been writing compensated reviews. While I had a slew of heavily unsatisfactory interactions with their team from the customer service standpoint from that moment on, and I hands down prefer spending my money at businesses who have fabulous customer service, my main concern was that I don’t have the resources to fight for my reputation with a business of that size. And you probably don’t either. I realize this is a story about what Amazon did, but I would imagine in this litigious age many large businesses might not do any differently.
So, I kept copies (printed and digital) of every e-mail they sent me or I sent them regarding that matter- even the ones following their initial accusation e-mail where I dished up some honesty with a bit of snark. The snark might not always make me look good, but if I said it then I have to own up to it. You never know when any entity will decide to purge e-mails, so I just find it’s best practice of have multiple copies of important e-mails stored in multiple places. So my advise to anybody planning on having any sort of public presence that still wants to write a bunch of reviews of their many on-line purchases is that it would be a good idea to make sure you save all of your own copies of anything that could be important to establishing your credibility.
So yes, on-line shopping can help families such as ours if handled cautiously. I still do a fair bit of e-spending when I need to, and while I do most of my shopping on-line now with Walmart and Target, I find that Jet and Beautylish really have the best customer service. The part of me that used to work in retail feels like the types of interactions I experienced with those two companies ought to be in customer service training manuals. I’m personally going through enough hard stuff, the last thing I want as a customer is to be buying so many products just to have a business feel like I need them so badly they can put me through whatever they feel like and still retain me as a customer… so I mentally start skipping through the meadows when a business really gets it right. Although, to be fair, I have never had a bad interaction with Walmart’s on-line team, and the Amazon supervisor who offered me the promotional credit and free year of prime really was trying to work with me but had no power to give me what it was I actually needed.
Otherwise, often a complete day of rest isn’t an option for me and it may not be for you, but pulling back on how much you do is.
