Thursday, 23 January 2014

Something Has to Give- Why Special Needs Parents Struggle in the Workplace

This past week has been really crappy.  Jack was home sick last Friday, the same day I had to take Nate to NIH, so John stayed home with Jack while Nate and I did the appointment.  Then the weekend and MLK were fine other than Jack and mommy both being a bit under the weather.  Then of course the snow hit.  The kids were home Tuesday and Wednesday, and now finally today they just have a two hour delay, and then school.  Tomorrow is a half day- I have no idea what is happening next week- the kids were supposed to be out of school Monday and Tuesday for some something that I have no idea what it is.  Fine.  Shall we count how many days that is of school that my children did not have (or did not have full days)?  I count 8 school days in a row- this is not spring break, that’s still coming. No, school is not daycare, but the fact of the matter is, it is part of our “coverage”, our daily routine that makes working possible.

I want you to understand that this is by no means a complaint about school, or the snow days.  They did the appropriate thing this week by closing, no question.  The same goes for local businesses and daycares.  There are major liability issues there, totally get it and have no problem with it. 

What I have a problem with is the culture that we have created for ourselves in the American workplace.  I don’t know how it happened- I think it must have been gradual, but it’s established an incredibly unreasonable expectation for families everywhere and if we want to “preserve the American family” then something has to change.  This is unlivable. 

How many parents who work outside of the home have heard this?  “Of course your family comes first and should come first.”  What is it followed by?  “But….”  I call bull shit.  I don’t blame immediate supervisors and not even the people above them.  This is driven by the most high up people in major companies.  This terrible culture that your family comes first UNLESS it happens frequently, UNLESS it’s inconvenient or God forbid, UNLESS it’s near a holiday or when a coworker is away.  In my mind, there is no BUT permitted in this phrase.  Family comes first.

I feel very strongly about this.  I also feel very strongly that my family needs the income provided by both my and my husband’s jobs.  We have two special needs kids, insurance that doesn’t cover MOST of what they need, and services that are way more expensive than those for a neurotypical kid.  Care for a day for your child while you work?  $100.  ONE swimming lesson?  $40.  Not to mention the number of appointments that are needed for our kiddos.  When I filed for FMLA for the boys it was for 12 hours a month for each child.  That’s 24 hours a month!  Of appointments!!  Now I won’t use that every month, but once again, it was necessary to request this in order to protect my job.  Does anyone ever stop to think that while mom and dad are not getting paid while taking FMLA they are still paying for special needs childcare?  We pay whether our kids are there or not.  Same as regular childcare, just more expensive.  It’s not the center’s fault the child’s not there right?  There goes more money….oh and also, your name is MUD at work because you have missed more time.

Hmmm, think about that equation- miss work, get in trouble, or file for FMLA, not in trouble but also not paid, pay for child care, have a stressful appointment where they likely talk about your son’s lack of progress (my world), come home exhausted and pop back into work where once again, your name is mud.  Sounds awesome right?  This happens to ALL parents to some extent but when your child has special needs it’s amplified.  And if you have two children with special needs?  Self –explanatory right?

So how does a parent in this situation handle 8 days of unexpected time off from school for both kids?  Seriously, how???  Thank God my husband’s job is a bit more flexible, they had liberal leave and he was able to be home with the kids for the snow days.  I telecommute, there is no such thing as a snow day.  We as a family are lucky that someone could stay home.  Many families do not have that luxury. 

If you are a parent who has to go to work on a snowy day (say…..a nurse J) who has a husband that has to go to work on a snowy day, and daycare and school are both closed and no family is nearby- what is the solution there?  Clearly someone cannot work, right?  OK great- but if you have a special needs child, and have needed more time off of work for appointments and encounter this situation when your name is already mud?  Oh and your child with autism has specialist appointments that your husband has already taken off for that day (but you have two kids)? And you drive up to your daycare only to discover that they are in fact closed because of the snow, but didn’t inform you?  WHAT DO YOU DO????

I ask this because I had a friend encounter this situation just yesterday.  A friend who was texting me about how stressed she was, and when I asked where she was, she said “at your door”.  With her son.  Because if she didn’t get to work she would likely get fired.  Yes, I already was working in the midst of a husband, two dogs and two special needs children- for the 3rd day this week.  At first I was completely taken aback- then, I admit it, I was pissed.   Then- I was furious.  At her work, at our society.  At the people who LIE and say “family comes first”.  Do you know how desperate this poor mama was when she showed up on my door step at 8:30?  Can you imagine what she must have been thinking?  Do I have to lose a friend now to keep my job? (No, never J) What if she says no because she is working?  That would never happen of course- John and I made it work.  Thank you by the way to my loving husband for that help.  I wasn’t mad at my friend after those first few minutes, not at all.  I was glad that she knew me well enough to know that I would be there for her.  We families have to stick together. 

Something, somewhere has to give.  Parents cannot be expected to do everything, while having everyone mad at them, while still paying for the services they are not getting (ask my friend if she paid for her little boy’s daycare yesterday- I am sure the answer is yes).  It feels like triple punishment- this juggling act is always difficult, but some days it’s just impossible.  If only we could cry uncle.  As I write this I have two children literally crawling on me- no matter how much I love them, I am thanking God that they will be out of the house in a little while- mommy needs to work.


  1. I hear you, sister.

    Luckily you have a supportive husband. I only have one kid (work full time outside the house), but being a single mom have its challenges too. Sending you a big hug. I know I need one.

  2. I feel this way a lot. When my older daughter was small and daycare was closed or she was sick, I had to call in because we have no close family, both my husband and I worked full time, but he had no vaction time, PTO, sick leave, so if he called in, he missed a whole day's pay.I had PTO and made less money than he did, so it made sense for me to be the one to call in right? Except after a while, I got in trouble for missing work, and of course if the day care was open and she couldn't go because she was sick, we still had to pay for the full week. It got to the point where I could not call in so hubby had to stay home, which he never minded or complained, but he did not get paid and if she was really sick and missed the whole week, he lost a week's pay and we still had to pay a full weeks daycare bill. What do you do? Oh and did I mention that there were children in the care who had parents that did not work at all and the kid's daycare was paid for by the state? If they don't work, why do they need daycare? So they can watch TV all day without worring about taking care of their kid (or in some cases, take care of their children!)....And then we had our younger daughter, who is special needs. No day care in our town would take her because they were not equipped for a child with her issues. My husband had a different job at this point, one with PTO, FMLA, ect. but he could not stop working because I was in school and working part time that had no benifits and did not pay enough to support our family. Thank God my sister in law had retired and lived close to where I worked and watched we are at the point that he has a better paying job with benifits and its closer to home and I have another job closer to home, but to far to have my SIL to keep her (it would take my entire paycheck to take her and go and pick her up...not much point in working in that case). We have no close family to keep her and no daycare options. She goes to preschool 4 days a week but if she is sick, what do we do? At least on snowdays my older daughter is here and can keep her (she is almost 15 and I work five minutes away) but its so sad that we are forced to work or be a mom/family but we can not do both.

  3. Yep, this is an American thing. Over here in Germany the people have a higher priority and are allowed more time off to take care of those personal needs. I think it has more to do with GREED, greed for the "profit above all" mentality that has consumed America in the last 30 yrs (or more?) And of course Jealousy from coworkers..."why does she always get off" comments from people who have lost compassion in their souls. Sorry cant think of a better way to say it right now. My son is calling...

    1. I think you expressed that perfectly. maybe I should move to Europe!!!