Thursday, August 11, 2016

Rant of a "Non-Working" Special Needs Mom

As I sat down to write this post about why I do not work outside of the home every sentence came off as an apology or a justification.  So I am starting over and I am going to try to make it clear that this is an explanation and an attempt at opening minds to realize that not every stay-at-home mom wants to be a stay-at-home mom.  And that's okay.  This is not a post to pit working moms against stay-at-home moms.  This is my experience.  I am not preaching that one is better or worse or that one is harder or easier.  I also recognize there are a number of stay-at-home dads, this is not written from or including that perspective because that is not my experience.

Now that the PC disclaimer is out of the way, I want to tell you why I am a stay-at-home mom and how much I hate it (pretty sure we aren't allowed to say that).  A few months ago as I was meeting with our son's autism program school liaison I was explaining to her what our typical weekday entails.

It went something like this:

Mondays: In home ABA 8-12, with school drop off for my oldest child at 9, then school drop off for my middle child at 12:30, then pick up for my oldest at 3:30 and pick up for my middle at 3:50, then in home ABA from 4-6.

Tuesday: Repeat Monday

Wednesday: Repeat Monday but add in a 1:00 counseling appointment for our oldest child who is working through a number of special needs sibling and military kid issues.

Thursday: Drop off oldest at school at 8:50, Clinic Occupational Therapy and Speech Therapy at 9:00 and 9:30, In home ABA from 10:15-12:15, school drop off for middle and then school pick ups.

Friday: In home ABA from 7:45-9:45 (drop off oldest in between), OT and ST from 10-11:30, school drop off for middle at 12:30, then school pick ups, then swim class at 5:30.

So there you have our typical week, not including extra curricular for our oldest.  Of course, you have to consider monthly appointments that are added in throughout and god forbid someone gets sick, because then that's another appointment to work in.  And don't forget all of the parent/therapist meetings and parent/teacher meetings and IEP meetings thrown in throughout the month.  Oh, and all of this is done with a 2 year old in tow and typically on about 4-6 hours of sleep.

After going through all of that the response from this female liaison was, "Wow, so you don't work do you?"

Ha!  Now I get it, she meant to say if you are doing all of that you must not have time or the capability to work outside the home, but that isn't what she said.

This rubbed me the wrong way for a few reasons and a recent encounter in which I was asked about my plans for work after my kids are in school has exposed the wound all over again.

First of all, I think we as women have become so hellbent on equal opportunities in the workplace and proving we are just as capable as men, we are quick to judge the women who are focusing all of their energy on running their household and raising their family (for whatever reason) as if they are somehow less than for not trying to have it all.

Secondly, this question ate at me because I want to work.  I have always wanted to work.  There are some women who have never wanted to do anything other than raising their family, which is commendable.  That isn't me.  Growing up I wanted to be an astronaut or a veterinarian.  When asked what I wanted to be I never said a wife or mom.  I don't think many girls did.  We had dreams aside from that.  After growing up I planned to be a professor or an attorney.  After having three kids, I didn't give up on that.  I continued working towards and earned my Master's, but I don't know that it will ever matter.  You see, as a military wife, supporting my family and my husband's career has meant moving every 1-2 years, which makes holding down a professional career of my own nearly impossible, even without the kids.  As it turns out employers aren't quick to hire women whose resumés show a work history with giant gaps or employment in 3 states in 6 years.  Before I had my children I worked 40-50 hours a week outside of the home and the plan was always to go back to that once my kids were in school and once the moves slowed down.

But as that day gets closer, I know it will not happen.  Our son with autism needs the stability of me home.  Managing his care, his therapies, his medications and playing mediator between professionals, making calls to insurance, keeping up with his IEP and school goals has become a full time job.  And that doesn't even take into account the amount of time and energy spent focusing on his needs, his behaviors, his skill deficits... the list goes on and on.  Even after he is in full day school, he will still have weekly outpatient appointments.  I could entrust all of that to a nanny (that I would probably have to pay more than I would make to take on our chaos), but would she know how to keep all three kids safe in a parking lot?  Would she know how to react if he starts self-injuring on the concrete (when you have to hold the two year old with one arm and keep your hand between his head and the pavement with the other)?  Would a nanny know how to get him in the door to school everyday (a ritual that has become a carefully orchestrated dance with a balance of incentive, consequence and calming techniques)?  Would the regression and inevitably increased anxiety be worth it so I can feel like I am doing something more with my life than "just being a mom"?  Probably not.

I know what being a mom to typical children entails, I was that before I was a special needs mom.  And even then, I found staying home with an infant harder and less fulfilling than working outside of the home.  That's just me.  But being a special needs mom is a different ball game.  And, no, it's not a contest, but I think if I had a camera on me day in and day out, the show would be enlightening to the world outside of our autism and special needs communities.

As a special needs mom I have fought more battles and solved more problems before breakfast than most in office jobs have to handle in a week (and I know, because I did that too).  As a special needs mom I get less sleep than most would think is humanly possible, and then face day after demanding day.  As a military spouse I don't have help from family or someone to call when I'm burnt out.  As a special needs mom, I clean up more disgusting messes than a hospital janitor on a daily basis.  As a special needs mom, this is not just a phase or the terrible twos or threes that we have to power through; this is life.  As a military spouse I face single parent ops and absent daddy for deployments and TDYs.  As a special needs mom I deal with the fall out of that separation tenfold.  As a military spouse I face the work and strain of move after move.  As a special needs mom with each move I have to secure new services, ensure appropriate education, sign off on a new IEP, handle regression and prepare a child with severe anxiety for a new life in new surroundings.  Over and over.

As a special needs mom, I balance the needs of two other children who often feel neglected and left out.  And some days I do a miserable job with that.  As a stay-at-home mom, there isn't a raise or a pat on the back for solving a problem or getting something done well.  As a special needs stay-at-home mom, there's no way to gauge how you're doing at getting the job done and most days you feel like a big fucking failure.  As a special needs mom, there is a constant gnawing at your brain about the future and if you are doing what you need to do to have everything in place so that your child will be able to live as independently as possible, or having a plan in place if that is not possible.  As a special needs mom, or any mom for that matter, you don't clock out in the evening or even for sleep.  As a stay-at-home mom you have to write unemployed or "non-working spouse" while filling out paperwork, and I glare at those boxes every time I check them off.  As a special needs mom you don't have the same freedom to vent about parenthood because doing so means you hate your child's disability.

As a stay-at-home mom you don't get to escape domestic life and go feel like you are a part of something bigger beyond your little family.  Don't get me wrong, my family is the most important thing in this world to me, but family is the most important thing in the world to my husband too and, yet, he still gets to have an identity outside of that family.  I do not and maybe never will.  After being out of the work force for so long, even if my husband and I decided to switch roles so I could pursue a career, starting over at this point would have my earning potential at next to nothing and therefore it isn't a feasible or sensible option.

So, no, I do not work outside the home, but I assure you, special needs stay-at-home moms are the hardest working "non-working" moms you will ever meet.



  1. Sing it sister!!! I'm so sick of that comment so you don't work!! Loved it xx

  2. You have so much on your shoulders and you don't need the haters adding another cinder block. Don't ever feel bad for venting. No judgement here!

  3. Oh how well I hear ya!! I am employed outside the home only because my husband can get home before our special needs daughters bus. I work at a school so I can have Summer's off with her. I, too, have raised an older "typical" kid and have struggled with the guilt and frustration that our best never is good enough. The worst is when friends say the get it when they compare some of their struggles of no sleep and fears of their toddlers to our life with our 17 year old. This is our life. Do I resent it? Some days. I fiercely love my daughters. I very openly say I HATE her seizure disorder and autism. If others judge, no problem. Walk a day in our shoes THEN judge away. I can say with certainty they'll sing a different tune. Hardest workers in the world- ROCK ON, you badass Mamas!!

  4. Bravo!!! You're doing a phenomenal job and are an inspiration to anyone with a family. I have a four-month old and am constantly struggling; I am in awe of you!

  5. You're blogs are AMAZING! I am a navy wife, stay at home mom of a 2 year old boy with autism! I felt so alone at times being a military wife you're kind of "forced" to make new friends and I'm struggling with making friends with women who have no children at all, then they wouldn't sympathize with the everyday things I go through, or do I befriend a mom and then have to explain "sorry my kid is ignoring your kid", I think autism is difficult for us parents because like you said in one of your other blogs, "he looks normal", what do I say to a bypasser in the grocery store who stops to ask my son his name and asks out old he is, what do I do when we are in the middle of the mall and he has an autism fit and everyone's looking at me like a bad parent because they think it's just a tantrum.


I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...