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Thread: "So, Do You Work?" New Blog Post

  1. #1
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    Default "So, Do You Work?" New Blog Post

    I hate when people ask me that because the usual answer for any full time caregiver of children (or any age loved ones), the answer is 'No', which is for course ridiculous.

    So.. here's my blog post: http://www.donnathomson.com/2013/09/so-do-you-work.html

    Happy Saturday, everyone, it's a beautiful fall day here!!!

    xo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    Great post, as always!

    As a senior citizen, near retirement age, I don't get this question any more.

    But in my younger years, when I was asked if I worked, I answered, "Yes. I am a paid caregiver to my two sons, who were born with disabilities and live at home with me." Paused. Waited for the deer-in-the-headlights expression to dim a bit, then explained about my children and the IHSS program.

    "Yep, I am your tax dollars at work, and thank you. I also save you lots of tax dollars, because the cost of out of home placement is quadruple what the state pays me. And I pay taxes on my income, including self-employment, so we're not getting a hand out. Oh, and what I earn as his careprovider, I use to buy him air pressure mattresses, hospital beds, syringes, special under pads, a power lift. Hey! I saved you more money!"

    I work 24/7/365, and my last vacation was in 1993, when my husband and I took our sons on a two week car tour of Utah. We provided their care as we would at home, just on the road, making it more difficult, hauled their equipment in and out of our van and trailer, everywhere we went. And, because we weren't "at home," I wasn't paid by IHSS for their care. We had a fabulous time, with incredible moments together.

    I am compelled to tell people this, so that they don't think that we are sitting here eating bon bons and watching TV, or taking trips to Jamaica, ripping off the taxpayers. It's impossible to explain the dynamics of caring for an individual, who is completely dependent, if the listener doesn't have some personal experience or exposure.

    On the one hand, I'm legitimizing my role/job as a care giver, by explaining that I am paid. I also explain that I volunteer my time, because Jon's programs don't cover 24 hours.

    On the other hand, people look at me and think, "why should we pay you to take care of your own son?"

    Well, the answer to that is, "because someone has to take care of him, and I'm the best qualified, and I'm NOT independently wealthy. I have to earn a living to support him. I earn it through giving him his care."

    I follow up with, "Why should a stranger earn money for caring for him poorly, when I can earn that income to give him excellent care, and spend my income on his needs?" It's just logical, common sense.

    Years ago, a dear friend's son was making $2/hr more per hour flipping burgers at In and Out, than I was earning as my sons' care giver. A teenager at a fast food joint earned more than I did caring for two medically fragile adult men. Go figure!

    This exemplifies the devaluation of both the caregiver and the person receiving care.

    And I feel that deeply, when I explain our situation to a stranger, because, whether we are or aren't paid to be care givers, our work is not appreciated, valued, or recognized as work.

    Another dear friend, many years ago, when my boys were teens, said to me, "You are doing God's work," in reference to caring for my sons. It was as if a light had been switched on over my entire being, and I affirmed that, indeed, I am doing God's work.

    So, it doesn't matter what someone else might think about my work as a care provider. I know what I do. God knows what I do. And He's the Boss.

    I am really good with that.



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Yes, a great topic! I don't get that question much anymore, we don't get out a lot to new places and everywhere we do go, everyone knows us already. :) I can remember when Caitlin was first born, recently came home from the NICU and I was at Walmart. I ran into a lady I went to school (college) with and stopped to chat. Of course, the first question was where are you working? I was like, I quit when my daughter was born and she replied, "don't you feel like you are wasting your degree??" Yeah, I didn't quite know how to respond to that! I could see where she was coming from as we were both good students and both were officers on the student AITP (association of information technology professionals) chapter. It still continues to this day. Last yr at Brian's work xmas party I ran into a different lady I went to school (where I got my computer degree) with and was chit chatting, of course she asked if I was working or not. She was now a IT manager at a health insurance company...she did say that anytime I wanted a job she would hire me! (that did make me feel good!). I know she could understand where I am at as she is a mom of quadruplets, one with autism. But they are adults now and the one with autism is able to be left at home, still lives with them but can be unsupervised. Her husband works where Brian does, that is why she was at the xmas party. :)

    It did pass thru my mind about perhaps finding a part time job, but with so many kids and illnesses (and medical dramas!), I don't think it would work out. My plan now that all of them are in school all day was to volunteer more and I signed on to read for Tyler's class last Friday in the afternoon. First volunteer thing this year and of course, illness strikes! I was lucky that Brian came home early from work on Friday so I was able to still go and read. He was going bow hunting in the evening and wanted to get home a little earlier so he could cut the lawn so it really was random that he was able to watch Caitlin for me to go to the school. It is a little depressing to think that I can't even sign up to volunteer without lightning striking and causing me to have to back out. Last yr I was supposed to help with math club for Tyler's class but the kids got sick for those 2 whole months so that was out. :(

    I do look at it that, if I didn't stay home with Caitlin & the other kids, Brian would not be able to work as hard as he does so I definitely feel I provide value in the home! It's funny though that the world assumes that because you stay home, that you never had a life before that.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  4. #4
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    I don't like getting asked this question and it is one of my mom's top pet peeves. She freaks when people ask her this since she thinks its pushy and patronizing. My mom was my caretaker.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    You have the hardest job in the world (according to Oprah, at least): You are the mother of 4 children.

    I'm sure that you learned many things in pursuit of your degree, which are useful to you in your job as a Mom and care giver. And that is the career choice you made, and you should be acknowledged just as positively for that choice as choosing an IT job.

    This is where devaluation comes in to the situation.

    I can assert from personal experience as a "single working mom" with an outside job, that it was hell! At work, I was worried about my boys. At home, I was worried about my job. I gave my all to both, and I was utterly wiped out most of the time. I don't miss the "outside world" of work at all. So much politics, sniping, gossiping, backstabbing, patronizing, harassment ... that was true of everywhere I worked, and that was a long list of places (I was an agency temp for awhile, after I graduated from college, so I had lots of different assignments).

    It irritates me that our worth is determined by whether we earn a paycheck, and the amount of that paycheck.

    Hold you head high, and answer, "Yes, I work in a lovely building, where I am in charge of 4 people, sometimes 5, and I literally run the place. The bonuses are incredible!" And when the person asks, "Oh where do you work?" with great anticipation, you can reply, "At home, raising my children." Betcha that person will have a surprised look!

    ((((((Funnylegs4))))))

    I suppose the question can be patronizing and pushy, but it's also just common conversational chit chat. The same applies, I think, to that other question, "Do you have children?" which we discussed in another thread.

    I think that it's important how we react and respond to the question, and that we react from a place of security in our selves and a feeling of self worth. When we recognize the value in our work, whatever it may be, whether it is compensated monetarily or performed voluntarily, we convey that to others, who then view us as valuable.

    To me, it is on us; it's our responsibility to change how others perceive us and to erase stereotypes.

    Your mom did a great job in her care taking career. You are the proof of the pudding! She deserves respect, praise, and accolades.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #6
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Yes, I actually chose the field I did thinking it would be more guys and less of the ladies gossipy/sniping but there were quite a few women and of course drama that comes with that! I actually am on the church council currently (it only meets 1x/month so I said I would try it when I was asked) and am getting a taste of all that gossipy, backstabbing stuff again. Lots of drama lately, can't go into it on the public forum here but it sure makes me not miss dealing with all that at all!! My term is up in February and I am thinking I will not pursue renewing it again. The best thing I did was join the gym I am at now! I get to talk with other adults, everyone is nice, they miss you when you are gone...it is so welcoming there! My parents, 2 aunts, an uncle and my sister in law even joined there too! And there are so many other people I know there and there has never been any of the political stuff going on (that I know of at least!). I love having that hour of peace and feeling good walking through the door and energized when I leave. Don't always get that satisfaction when I come home, thinking of all the stuff I need to do around the house and wondering what illness or medical things are going to derail any plans. That is one thing about working at home...it's hard to get away from it to get a break. :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  7. #7
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Lisa))))))

    You have the hardest job in the world (according to Oprah, at least): You are the mother of 4 children.

    I'm sure that you learned many things in pursuit of your degree, which are useful to you in your job as a Mom and care giver. And that is the career choice you made, and you should be acknowledged just as positively for that choice as choosing an IT job.

    This is where devaluation comes in to the situation.

    I can assert from personal experience as a "single working mom" with an outside job, that it was hell! At work, I was worried about my boys. At home, I was worried about my job. I gave my all to both, and I was utterly wiped out most of the time. I don't miss the "outside world" of work at all. So much politics, sniping, gossiping, backstabbing, patronizing, harassment ... that was true of everywhere I worked, and that was a long list of places (I was an agency temp for awhile, after I graduated from college, so I had lots of different assignments).

    It irritates me that our worth is determined by whether we earn a paycheck, and the amount of that paycheck.

    Hold you head high, and answer, "Yes, I work in a lovely building, where I am in charge of 4 people, sometimes 5, and I literally run the place. The bonuses are incredible!" And when the person asks, "Oh where do you work?" with great anticipation, you can reply, "At home, raising my children." Betcha that person will have a surprised look!

    ((((((Funnylegs4))))))

    I suppose the question can be patronizing and pushy, but it's also just common conversational chit chat. The same applies, I think, to that other question, "Do you have children?" which we discussed in another thread.

    I think that it's important how we react and respond to the question, and that we react from a place of security in our selves and a feeling of self worth. When we recognize the value in our work, whatever it may be, whether it is compensated monetarily or performed voluntarily, we convey that to others, who then view us as valuable.

    To me, it is on us; it's our responsibility to change how others perceive us and to erase stereotypes.

    Your mom did a great job in her care taking career. You are the proof of the pudding! She deserves respect, praise, and accolades.

    Love & Light,

    Rose
    I know it is just a question. People usually mean well or it is the only thing they can think of to ask. My mom has a tendency of reading into things too much whereas I just smile and give a simple answer and that's the end of it. But yes she did a great job! It also irritates me that self worth is tied into a paycheck. Sad really.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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