General disclaimer to avoid flamethrowers and other forms of vitriol: I am writing about my experiences as a parent of special needs children. I know several parents who work full time and have special needs children. This is not a comparison, judgement, or any way to suggest my life is harder, full of more strife or in any way inferior or superior. It’s just my take on things. Ok then…
I get asked, a LOT, what I do for a living. In this day and age, it’s a pretty common question. I know lots of people in fulfilling careers, in-between jobs, self-employed, work at home parents and any other combination of the aforementioned. For me, staying at home wasn’t always a choice. As a domestic abuse survivor, I was once “put in my place” and told I needed to be home where I belonged! That’s another 50K word post, so I’ll save that for another time, or at least when I publish the book I’m editing and trying to republish about it. Anyway, when my son was young, he had a long list of extreme challenges that kept me busy from the time I hit the floor at 5 AM until sometimes late into the evening/night. He was an eloper (prone to just getting up and trying to leave his room, the yard, his house, any public place etc), violent (anything from throwing a television down the stairs at me while threatening to kill me, pulling a knife on me and/or threatening to kill himself on numerous occasions), extremely ritualistic, a picky eater to the point of almost dying and needing to be hospitalized for two months to save his life. Oh, the stories I can (and will eventually) tell.
So, my busy days were busy just like any other parent, but with different “things” going on. On top of all that, I was constantly berated, threatened and controlled by an unpredictable, alcoholic husband who made sure that every day I knew how worthless, fat, unappealing and stupid I was.
It was the best of times…it was the worst of times. I endured dark times of misery and spent many, many nights crying myself to sleep, trying to figure a way out of it all. Sometimes I look back on it and wonder how I ever got through it all. This December, I will have been a widow for five years and I look at how independent and strong I am and I am grateful for the fact that I’m here today and my life is the way it is, but it certainly wasn’t always that way.
One of the unadulterated joys of being both a widow AND the parent of special needs children is your symbiotic relationship with the phone. I figure I have spoken with a number of people on the phone over the years equivalent to the population of earth and any other future worlds discovered that are inhabited. My hold time is immeasureable, my patience legendary (well, I just hope they can’t hear me while I’m on hold speaking in tongues and raging about the music I’m forced to listen to). If I ever accomplish anything silly in my life, it will be to challenge hold music everywhere. I think there should be a choice menu: “Thank you for calling the [insert government agency, school office, doctor’s office, insurance company]. Your estimated hold time is about the time it will take to cook dinner from scratch, complete a load of laundry from start to finish (excluding folding ~ ain’t nobody got time for that), or mow the lawn. You have several choices to make during this marathon hold time. Please listen carefully to the choices because our menu has recently changed. Press 1 for Death Metal, 2 for Today’s Favorites, 3 for Intense, Yet Unbearably Distorted Low Quality Jazz, 4 for Badly Composed Elevator Music that Destroys All Your Childhood Favorites or 5 for Silent Hold, which in effect means we will come online and tell you every 17 seconds how much we appreciate your business and that a representative will be with you shortly.” Note you will have to make at least five of these phone calls either day or week.
I wish that I had gotten my degrees and was working in a position where I could afford to hire a daycare or have good before and after school care. Even though my son is 18, he still isn’t crazy about being home alone and although he is high functioning enough that I can run to the food store or pick up a prescription while he’s home with my eleven year old, I don’t leave for long. So, it’s not always about an age. I have had people say, “Oh! He’s 18 now! You can do anything you want!” [cue maniacal laughter] Um, no I can’t. Every single thing I do has to be planned and coordinated. I have to plan for medications, meltdowns, extremely short menu lists. I have resorted to doing small bursts of mystery shopping jobs so I can plan to do these when either someone is here to watch them or they are both in school. Summer vacations are unbelievably stressful times for me. I had a very inconsiderate former “friend” who read my stress-induced post about school finally going back and how I needed some down time. She replied on that post, “If people complain about being a parent, then why did they even have children in the first place?” I haven’t spoken to her since that day. I’m sure she feels so proud of her statement. I slept well after hitting the delete “friend” button. I sometimes hear Gotye’s “Now You’re Just Somebody That I Used to Know” in my head when I click the unfriend button.
While I only touched upon a few of the things that encompass my stay at home mom world, I really wish that people understood that sometimes, being at home isn’t a choice. I sacrifice just like the rest of us, but I do my best to do nice things for my family when I can, but I often have to let my kids down and tell them we “can’t afford this” or “maybe next month when things are better”. I’d like to say I chose the stay at home life, the stay at home life didn’t choose me, but it’s just not true. I am however, optimistic and hopeful that I will still do great things. I want to finish editing and get my book out there, reach people with my blog and hopefully help someone learn just a little bit about Autism and parenting a child with special needs and one day erase the assumptions and questions surrounding the world in which I exist.