Tuesday, September 17, 2013

On looking for a job, unease, and more Jeneva Stone

So, I've been waking every morning with a vague sense of dread, and it's not the usual will Sophie have a lot of seizures today? Will Sophie be alive this morning? Will Oliver be in a good mood or bite my head off? Will Henry make it through high school without sex, drugs and rock and roll? or Will I make it at all, today? Yes, that's the usual, a million worrisome thoughts that generally disappear by the time my eyelids are fully raised and my cheery morning self slips into my body. Lately, though my dread has continued on into the morning, and that's because I'm looking for a job. The work that I've been doing for many years has come to an end -- no more federal dollars for the projects that I've participated in, and the non-profit I am currently under contract with has little to no steady work. The problem with getting just any job is that I have very little flexibility and need flexibility. I have to be ready to deal with Sophie if she has a bad day and can't go to school. I have to make at least $20 an hour to break even and pay for childcare for her to begin with, and then there's Oliver who is at a time in his life where he needs me to be with him, particularly after school. Given the amount of stress in our home -- some of it bloggable and some of it not -- and the ongoing struggles that siblings of the disabled face, I feel that it's paramount that I am readily available for my boys. While I'm perfectly aware that we're fortunate to have one decent income and have had some help from my parents and my up to now steady part time work, I'm also perfectly aware of what I might have earned, might have contributed, might have been doing if my first baby hadn't developed this devastating disorder and been so disabled by it. Let's face it: I'm the CEO of Sophie, Inc., and it's a volunteer position that has reaped many, many rewards but it has also made it extremely difficult to do anything else.

Better minds have grappled with this and are better able to articulate it, and one of these is my friend, the writer Jeneva Stone. Here's an excerpt of her most recent thoughts with a link following to the complete post.
This bit of data changed my self-narrative. I had been grateful and continue to be grateful for the medical assistance Robert receives and the nursing care for which we're now eligible. But had these supports been available sooner, I might have been able to earn more money, pay more taxes, spend more and stimulate the economy, participate at my child's school, and otherwise enrich my community. 
 Instead, I had been cowering and avoiding reading the comment threads that follow news stories about children with disabilities--comments that blather on about families and choices, children who are burdens to society, people who don't want to pay for the needs of disabled children because their parents chose to have them and foist them on the rest of us, people who are concerned about their tax dollars being wasted. How to respond to this? Whine about paying for the incarceration of children some of you out there abandoned and/or failed to parent properly, or your ER costs because you won't pay for health insurance? Hmmm. 
But now I know that by being a responsible parent, I saved taxpayers $7 million dollars at tremendous cost to my family's financial well being. I feel good about that. I've made a real contribution to society, even if unrecognized. Now, please, stop talking trash about me, my kid and my family. 
Jeneva Stone, from Busily Seeking 2.0: The Costs of Caregiving 

Read the rest of it, here. 

Reader, if you are the primary caregiver of a disabled child or children, how do you balance work (the paying kind) with your duties (the non-paying kind) and if you don't balance them, what does it look like? If you are not the primary caregiver but, rather, an innocent bystander, I'm interested to know what you think about this dilemma.


  1. It's been 19 years. I should have it figured out soon. And then i will share. I am writing a related post right now.

  2. As important as I thought it was to be home for my girls in the preschool years, I now believe that it is as vital, if not more, that I am here, available, listening and watching during their middle and high school years. I fully understand the dilemma of wanting to work, to contribute, to create, and to earn money juxtaposed against the knowledge that very few jobs offer the flexibility necessary to raise children. Even for parents of non-disabled children, the school holidays and teacher conference days and sporting events and homework help require a parent who is close by, who is intimately acquainted with the routes and schedules and goings-on at school and in their lives otherwise. I can only put out the desire into the universe that something comes your way which is both financially lucrative and flexible in its timing as well as intellectually stimulating and fulfilling for you. (Don't laugh - I heard that! It could exist! And the least we can do is put the request out there.)


  3. Just popping in to say that oh, Elizabeth. Your writing here is even more powerful than usual. I mean, not just this post. but the past few and of course all the others before but especially in the last few days.
    I want you know that, just in case you did not.

  4. For years I worked casual as a nurse which means I picked up shifts here and there, which also means I have no pension. My ex-husband is a pilot and his schedule was only given out a month at a time so there was no way we could ever get childcare that could accommodate both his schedule and a nurse's. So I worked very little. When Katie was older we couldn't find anybody who could safely take care of her because of her behaviors.

    Now Katie is in care which costs the province approx. $150,000/year plus. I was her unpaid caregiver for almost sixteen years which saved the government almost a million dollars.

    I work full-time as a nurse in cancer care and it's still way easier than taking care of my daughter whom I love more than anything.

    I hope you find something Elizabeth, it's not easy, any of it. Sigh.

  5. I am eternally grateful I've been able to be the non-paid CEO of this family. We've had grandparents in town, helpful neighbors and friends and my husband has a flexible/self-controlled schedule. I am humbled every day by the single parents, the two "working" parent families, the geographically or otherwise isolated parents. If it's been this hard for me, in our situation, I can't imagine what it's been like for them.

  6. I loved being a lawyer but I had to give it up to care for my special boy full time. Lots of complex medical stuff. I miss working every single day, and I'm pretty sure I'll never get to do it again. I hope you find something great to do.

  7. The great state of Colorado pays me to be Max's CNA. I am a state certified nursing assistant, and get paid to do his activities of daily living. It's a decent income, enough to keep me home with him and not looking for another job in the outside world. But, if things were flipped topsy turvy and I needed to work outside the house tomorrow, I would probably try to work for one of the clinics that sees Max, as a parent liaison. Someone who speaks doctor talk to the doctors, and parent talk to the parents. I've got a knack for that. But, for now, I'll keep on at home with Max. I like it here.

    Best of luck on your job search. I hope you find a perfect fit for your family.

  8. My 14 year old son is technology dependent - he has a trach and requires a ventilator 24/7 due to his disease. We have, therefore, qualified for skilled nursing in our home since he come home from the hospital 14 years ago. The majority of our nursing has been paid for by private insurance and those times that our private insurance didn't cover nursing, Medicaid did. I am an attorney and both my husband and I work full-time and we have three other children. How do we do it? We have been fortunate to have mostly reliable nursing the last 14 years. For the majority of his life, my son has been relatively "healthy", meaning no hospital stays for sickness. He doesn't attend school. While my husband and I both work full time, neither one of us has been able to put in the hours needed to be at the "top" of our careers and we are both okay with that. We are just thankful that we've had nursing for our son and have been able to work at all. My husband and I have also both worked for very understanding and accommodating employers. I work for a very small law firm and my husband works for a very large international company. I should point out that we get no almost no respite nursing and my son requires 24/7 monitoring and care. So, the downside is we get very little rest/sleep and are exhausted all.the.time.

  9. I wish I had a comment, some wise words to share, but I just don't. I'm thinking about you, though, and God knows I'm sure it isn't easy.

  10. Twenty years. Single father. Severely disabled daughter. How do I balance? You read my blog. Part faking it, part voracious advocate, part good state to live in for medical insurance, part praying for a black hole to destroy all life as we know it in an instant, part wanting to run away, part taking control and doing what needs to be done, part studying filicide/suicide, part working when I can, part crying when I must.

    We rise to the occasion. We balance. Some say "what choice do we have?" My Mom says we have two choices. We can do it right, or we can f--k up.

  11. Elizabeth, my only saving grace when Nicole was alive is that my supervisor at my full-time, paying job offered me a tremendous amount of flexibility. I did a combination of in-office, telecommuting, and 4-day work weeks. Unfortunately, I never found a way around the mental anguish of 'what if,' the dread, and the anxiety the goes along with it. We wake up with it and lie down with it. And even with Nicole gone, I still play the what-if game: What if I could've done more? What if I wasn't a good enough mother? What if.... It's all lot and parcel of caring for sick children.

    I don't know what kind of work you're looking for, but have you considered tutoring from home? There are many online agencies, I think Smarthinking is one of them, that will pay you to log on and tutor students. Whatever it is your aiming for, I hope it comes swiftly. Good luck!

  12. Elizabeth--I am so grateful to have you in the world. Money is the crappy reality of life. I am rooting for you. I'll never have it figured out, but maybe enough voices in chorus can make a difference with public policy. Colorado's approach makes sense--it's what the military is trying with disabled Iraq War vets. Makes more emotional and financial sense to pay family caregivers and keep families together. Bless you, Elizabeth--I'm so glad you're not a saint.



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