Monthly Archives: June 2017

It’s a privilege to get to teach.

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As a mother of a child with a disability, my ability to work full time is extremely limited. I am very lucky that I am one of the few who can. And who can not only work, but work doing something I love— teaching and writing.

The statistics for all working women suck. We are paid less. In fact according to the US Congress Joint Economic Committee, on average, we are paid $10,800 less than men for doing the same work.

For mothers, it’s worse. Because regardless of our call for equality, we still do most of the work. The US Bureau of Labor Statistics (https://www.bls.gov/news.release/atus.nr0.htm)

  • On an average day, 83 percent of women and 65 percent of men spent some time doing household activities. Women spend an average of 2.6 hours on such activities, while men spent 2.1 hours.
  • On an average day, 19 percent of men did housework–such as cleaning or doing laundry–compared with 49 percent of women. 42 percent of men did food preparation or cleanup, compared with 68 percent of women.

For working mothers, there is much more to the picture than any of these stats can illustrate. We have to do more to prove we can both be wonder moms and wonder working women. It’s a ridiculous expectation.

It’s no wonder so many of us drink.

My academic research of mothers of children with disabilities clearly supports that as with all families, mothers are the primary caregiver.  And in my research with mothers, all of them note that they miss working. A woman with a degree in psychology serves tater tots at a school cafeteria so she can get her kid on the bus and be there when he gets home. Another mother had to leave her social work job she loved to care for her son and then years later, when she tried to go back part-time, that also failed as his needs as he got older increased instead of becoming easier.

According to the US Labor Stats (https://www.bls.gov/news.release/famee.nr0.htm)

  • In 2016, 95.6 percent of employed fathers worked full time, compared with 76.3 percent of employed mothers.

According to Caregiver Statistics (http://caregiveraction.org/resources/caregiver-statistics)

  • 14% of family caregivers care for a special needs child with an estimated 8 million caring for special needs children under 18 years old.
  • Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lower than non-caregiving families. The poverty rate is higher among families with members with a disability than among families without.
  • 47% of working caregivers indicate an increase in caregiving expenses has caused them to use up ALL or MOST of their savings.
  • 66%have had to make some adjustments to their work life, from reporting late to work to giving up work entirely; and 1 in 5 family caregivers have had to take a leave of absence.
  • Women who are family caregivers are 5 times more likely than non-caregivers to live in poverty.

According to the Sloan Work and Network on Work and Family (file:///Users/darolynjones/Desktop/Child_Disability.pdf)

  • Having a child with a disability is estimated to reduce maternal employment by 6.5% for wives and 10% for female heads of household.
  • In a national survey of families with children with special needs, 18% of mothers reported that they provide 20 or more hours of in-home health care to their children each week.

 And finally from my own research and dissertation on mothers of children with disabilities:

  • Most mothers then have to remain at home to care for their children, those mothers are deprived of the satisfaction of being employed.
  • Social isolation for any mother staying at home to raise a child may be typical, but much worse for mothers of children with disabilities.
  • Because the level of care required for children with disabilities is greater and occur for a longer time, mothers are more often excluded from the workforce or have unsatisfactory employment patterns such as working only part-time or work in positions we do not like or are overqualified for. This leads to further isolation and stress.

Even though I consider myself lucky, I also consider myself unlucky and I’m not alone. I was on my way to becoming a leading school administrator when my son was born. I had to quit to care for him. Determined to keep in the teaching and professional game, I consulted, wrote, and published part time and completed my doctorate which was more flexible than my once 10 hour work days, five days a week.

With my doctorate, I sought a career in higher education, but quickly realized that a tenure line position was not possible for me. While you may only have classes two to three times a week, the committee work and publishing expectations are very rigorous. I had this vision that professors just taught, hung out with students, drank coffee, and periodically wrote. This career in higher education that I thought would provide more flexibility was really no different than the career I had left and not possible with the caregiving my son requires.

Because my husband is in a science field and makes more than I could ever make in Liberal Arts, he moved ahead while I, despite having a terminal degree in my field—of which I had obtained while caring for a severely medically fragile child and working part time— I was going backwards.

I accepted a contract teaching position and teach on a ¾ time contract that pays me over the course of 10 months. As a contract faculty member, I am afforded an office that I share with a fellow contract faculty member, a laptop computer, and access to university services. As a ¾ time, I am supposed to work 30 hours a week, but like most people in education, that number is fantasy. I work 40 to 45 hours.   And I make a whopping $32,000 a year. When I left K-12 in 2003, I made $65,000 a year and was moving up. And now a doctorate degree that costs thousands and medical bills and extra caregiving expenses that are always rolling in, I make $32,000.

And yes, I’m bitter about that. I’m not going to lie. And I am fortunate to work in a good department with good faculty, but certainly there are some that do not treat me as the professional I am, who see me as “less than” because I am a contract and not a tenure line.

As a mother to a 14-year old child with a severe disability and as a kid who grew up in poverty, stigma and isolation aren’t new to me, but it still stings and hurts.

I only know of three other mothers at my university whose children are similar to mine. One is a single mother who has to work, and she struggles to keep up with her department’s requirements and her own health has been significantly impacted. The other has a husband who has more flexibility and can home more with their child. The last one is a librarian and opts to work the lesser paid and least attractive to any professional university librarian, the overnight shift. She opted for so her daughter can be cared for by her husband while she is at work. When her daughter goes to school, she sleeps and then is home for her until her husband arrives. She really only sees her husband and other children on the weekends.

But when I review the statistics and these stories, I am fully aware of how privileged it is that I get to teach, that I even have a job.   Yes, my entire salary goes to medical bills and equipment for my child, but at least I can do that.

And I have been an educator and writer for 25 years. And I love teaching and writing. Teachers and writers aren’t in it for the money. It’s like air for us. We have to have it.

So, yes, it’s a privilege to get to teach.

If you are a mom to a kiddo with a disability and reading this, please comment and share your own story. And share this blog post with others.  lyn teaching.jpg

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So Damn Mad that I Feel Like I’m Going Mad

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I’m so damn mad that I sometimes think I’m going mad.

I have better chances of winning the freaking lottery than accessing quality home health care nurses to care for my son. Without home health care, I couldn’t work. Without home health care nurses with him, he couldn’t attend school. Without home health care nurses assistance, I couldn’t get him to a doctor. Our choices are to turn him over to one of those horrible children’s nursing homes (which are mostly like nursing homes for senior citizens—you go there to die) or put up with home health care nursing.

What people don’t understand about having home health care nurses is that they are only required to feed Will, give him medications, and toilet him. That’s it. They don’t have to talk to him, they don’t have to interact with him, they don’t have to engage him at all. He sits in his hospital bed in front of a television. The best I can get most of them to do is change the video when he’s upset.

There are those few and rare good ones who will interact, even play with him, but most of them do not. And they don’t have to.   He’s a patient, not a child to them. So, I hire someone to come over for four hours every day to either do therapy with him or engage him in developmental play.   More than half of my summer salary goes to hiring other people to 1) make sure the nurses are doing their job and caring for him correctly and not destroying my house and 2) interact and engage with Will positively. And I’m grateful and privileged I can even do that. I know of many families whose child stays in bed all summer because they don’t even have a way to take them outside and they don’t have a mobility van to even take them outside the home.

And with the home health care nursing shortage, there isn’t even a choice anymore between the good ones and the bad ones. There are just the ones or the nones.

On Will’s last week of school, his Wednesday nurse quit, gave neither me nor the company any notice. Grown, professional nurse with three children of her own. Will liked her, had even become attached her. They do this often. They just leave. They never even say goodbye. He doesn’t understand he’s a patient to them. He thinks they actually care for him as a human being. We actually start to think they give a shit about us too. They are in our space, in our intimate home. They know everything about Will and too much about us. And then they just use us up and leave.   Emotional vampires.

And the nurse who is here on Tuesday and Friday decided to take three weeks off for a vacation. I wish we could take a family vacation, but we can’t find something close that is both affordable and accessible for Will.

This week, finally, a new Wednesday nurse oriented, and she opted to not take the case because my husband intimidated her because he didn’t smile the entire time she was here. He kept his head down frantically trying to get caught up from taking the part of the day off to take Will to the doctor. He wasn’t aware that he had to put on a dog a pony show. He was able to work from home that day and the two nurses spent four hours sitting on the couch we so rarely get to sit down on, swapping their life stories, paying little to no attention at all to Will unless he needed toileted or fed. He’s just a patient, a body to them.

Maybe I should take out an ad:

Happily married for 20 years, professional couple seeks competent nurse to care for their delightful, sunshine son who has severe cerebral palsy and autism who has had 37 surgeries in 14 years and who has come back from death three times. Our home is clean and you can make yourself comfortable while here as long as you pick up after yourself. Please don’t talk on your phone all day. Please don’t play games on your phone all day.   Please don’t read all day. Please don’t fall asleep on your shift. Please don’t take him out in our van and then leave him in the van with it running while you run into the CVS to buy a cold soda. Please don’t break his ankle when you take him out on a walk because you forgot to fasten his feet in. Please don’t let him fall out of his wheelchair because you didn’t fasten him in. Please don’t bring your family drama into our home and ask us for financial help. Please don’t steal from us. Please don’t overflow the toilet and leave it and ruin the floor and the contents below in our basement. Please don’t complain to the agency when our lift isn’t working, we are short on supplies, or the wheelchair brake goes out because we are trying to get those companies to do their job too. We advocate for our child all the time. Don’t expect us to be perfect human beings. We work full time and are under constant stress from managing Will’s nine pediatric specialists, feeding supplies, and nursing care and our jobs. Please give us some grace. And please treat our home like you would your own or better. And finally, please do care for our son both medically, professionally, and personally. He’s our child, not just a patient.

Oh, and we also like long walks on the beach….so we might ask if you could let us have a rare lunch or dinner out, just the two of us.

*And yes, all of those things have happened to Will and to our home with home health nurses.

Home health care nursing agencies and their nurses have all the power. Home health nurses are in such demand that they can come and go as they please. They can choose which agencies and which families to work with and for. Supposedly, we families can choose our nurses, but that’s not really true. Our choices are extremely limited. If Will has a bad day, they start fishing around for other cases. If we aren’t all rainbows and unicorns, they complain to the company and again, start looking for other cases.   If my house is perfectly clean or my laundry isn’t caught up, they let me know. They compare families and cases. I even know of a family that does give their nurses money on the side just to keep them. This is illegal and not allowed and If I had that kind of money, I’d hire who I want and say “fuck it” to this bullshit, broken system.

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I get so damn mad that I feel like I’m going mad.

This is my house. This is my child. This is my life. You would not want me coming into your home and treating your child the way you treat mine.

Things are 100 times better than before we had Obamacare, but we have a long way to go. Nurses shouldn’t be able to attend non-accredited schools with little to no admittance requirements and who don’t even practice clinicals. We have had several nurses who can’t even change a Gtube or put in an IV. My husband and I can do that with Will.  Nurses should have to engage in professional development and ongoing education. Nurses should be compensated more. The whole system sucks, but right now it’s the only shitty system that we have, and we families are trying to even hold onto the shitty parts of it.

I am privileged because I do get to work and I can supplement Will’s care, but still, I make half the salary I used to make because I’ve had to take a job that pays me less and doesn’t let me do everything I want to do so that I can be at home more with Will. I know that having children and being a working family is hard, but let me tell you folks who have typical children, it is about 200 times harder when you have a medically fragile child.

 I get so damn mad that I feel like I’m going mad.