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 3^rd 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.