… and how I hope to change my life so that it’s even better.
The keeners who read this blog will note that up until yesterday, I’ve manage to publish a post every Monday and every Thursday since I started this blog. It’s a pace I’d hoped to continue indefinitely, and two months in, I’ve already broken the chain.
I do apologize to those of you who like to read my blog. All I can say is, such is life.
Life gives as much as it takes, however, and so I have a post!
I didn’t post yesterday because I was occupied caring for my youngest son. He’s 23 years old, well past the age when constant care is expected to be necessary, and yet he does require constant care, because he is profoundly autistic. He is unable to communicate more than his basic needs: “Want Kraft Dinner” is about the most gramatically correct sentence he can utter, and the most complex. When it comes to telling us what’s bothering him, it’s a guessing game that usually ends with no real answers.
And he woke up Sunday morning with some kind of pain or trouble that caused him great distress. His communication was even more disordered than usual: “Call police!” “Go to hospital.” “July. Get married. Happily ever after.”
If you can make sense of that without any context, you’re more of a genius than I am.
He banged the wall, leaving several big holes. He upset the entertainment centre, breaking a DVD and the VCR player. (Talk about hard to replace!) He broke the cover on the bathroom light. He banged his head, arms, legs against the wall. He has bruises. His dad has bruises. I have bruises.
Finally, yesterday morning we gave up and took him in to the emergency department. The staff there were fantastic, and it wasn’t long before we saw first a nurse, then a doctor, who asked great questions and had a look at ears, eyes, throat, and a boil on his leg.
No real answers. His ears looked a bit distended. Not certain if that was because he had an ear infection, or if it was because he was poking his fingers in his ears constantly, or maybe both, but the doctor perscriped antibiotics, and contacted the family doctor. We are to go in to see him next Monday so he can check Robin’s ears, and if the behaviour upset doesn’t stop, we’ll see him sooner for a sedative.
It becomes obvious that a parent with a child like Robin simply can’t take just any job. One parent has to be home at all times–behaviour like Robin’s is both violent and unpredicatble, and someone has to be ready to rush in and bring him home if he starts to act out at his work placement.
In our case, that parent is me.
I have two advanced degrees, and if I had followed the expected career path, I would have been earning upwards of $75,000 per year in a full time position. Having done the work I’m trained for part time for five years, I know that I would have been able to stay the course until retirement, or even after.
Over a twenty year career, that means I’ve forgone about 1.5 million dollars in income.
Not pocket change by any means!
Parents of children with disabilities and people who themselves have disabilities face the same problems worldwide. The collective will to support those who struggle with a living income seems to be lacking. Folks don’t seem to realize that they are only one car accident, stroke, fall, or pregnacy away from experiencing life with disability themselves, and private insurance is not only more expensive, but simply not feasible for the majority of the population.
Another story I read yesterday reinforced this fact. In Be A Free Range Human: Escape the 9 to 5, Create A Life You Love and Still Pay the Bills, Marianne Cantwell tells the story of Jon Morrow, a blogger at Boost Blog Traffic (a blog I’m going to be following in the very near future, like this afternoon!). Jon tells his tale of being hit by a car, re-examining his life, and choosing to move to Mexico and start a lucrative career blog writing and coaching. What he doesn’t say until halfway through the story is that the accident left him paralyzed from the neck down.
In order to qualify for Medicaid and other government programs, he was forced to spend only $700 on living expenses. The rest of what he earned HAD to go to medical expenses.
What kind of apartment, food, clothing and transportation can you afford on $700 a month in the United States or Canada? (Answer: you can’t even afford the basics on this)
Worst of all, he was not rewarded, EVER, for working to better himself. If he made $5000 in a month, he was only allowed to spend $700 on living expenses. The other $4300 had to go to defray his medical expenses. He says, “Nothing was left. Ever.”
He got sick of it, moved to Mexico, started making big money blogging, and hasn’t looked back. He supports himself, his parents, and a whole nursing staff with his voice and his computer.
Not every disabled person is that lucky, nor every caregiver for a disabled person. Some don’t have the support Jon did (and I do). Some don’t have enough education to make a go at something like that. Some don’t even have the mental capabilities, or the capability to move to another (less expensive) country.
So to blame those who remain in poverty for their own poverty is petty minded and unfair. We never know what another person is facing. We can only know (and even then only partially) what WE are facing.
So. I am facing at least five more years of being a stay-at-home parent of an adult with severe disability. That’s when his father is set to retire.
Until then, my income is fairly secure, as the majority of it is spousal support, and Bill has a platinum-plated career, and is at the top of his pay grid.
But the money isn’t enough to live well on, or to repay my student loans. And once he’s retired, my income will end. I will be in my late 50’s by that time–too late to start again in any sort of career and hope to end up at or near the top.
Not that I want that for my life anyhow.
So my own path out of poverty and into financial independence will involve some sort of self-employment. I’m best suited and trained for writing, coaching, and event planning–all viable careers in this digital age.
But I’m also an artist, a musician, and I’d like to make movies. Again, all careers that are much more viable now than they have ever been before, thanks to the internet. In the past five years, having a “Free Range” lifestyle has gone from being a pipe dream to being the newest viable path to a life of self-fulfillment and even riches.
And I guess that’s really where I’m going with this post. As 2014 progresses, I’ll be planning and putting into action a new lifestyle, one that earns me enough money to enjoy life, one that allows me to help my family and others, one that plays on my strengths and helps me to develop new skills.
Follow me as I journey!