While society doesn’t implicitly state it when discharging you from the hospital with your brand-new cherub of a newborn, moms are expected to make one of two choices – either stay home with your child or go back to work.  Some moms are fortunate enough to have a choice.  Others are not.  Each ultimately makes a decision that is best for their families, their children, and themselves.

Some moms stay home to raise their children.  Some moms have to return to work, thus providing for their children financially.  Other moms choose to return to work and, by doing so, are also doing their very best for their children by helping to provide financially and ensuring that the mama feels satisfaction in her professional life – a satisfaction which translates to less resentment at home.  All moms still take on the most difficult job of all in raising children – simply being a mother and all of the boo-boo-kissing, listening, diapering, snuggling, mediating, and delegating that it entails.

When my son was born, I had every intention of returning to work and did so when my son was 10 weeks old.  We were fairly confident that we could manage on a single income – my husband made considerably more than me  - but it would be tight and mean a definite adjustment to our lifestyle.

So, why did I go back to work?  Well, I enjoyed working.  I loved my job as a Quality Engineer.  Sure, the stress was tough, but I thrived on the challenge.  Honestly, I was never the kind of gal that saw myself doing anything else.  Being a stay-at-home mom simply wasn’t for me.

Being the mom of a special needs child throws a wrinkle into the best laid of these plans.  Many of us who might have otherwise been happy in our careers are forced to make a decision to stay home to manage the many aspects of our children’s care or to find other options, which sometimes exist but sometimes do not.

From the beginning, Jack was vomiting frequently with meals.  Not just vomiting, but projectile-emptying-his-stomach-contents vomiting.  I thought it would get better.  I was wrong.  After a few weeks staying with family during the day, it was clear that Jack needed me at home.  He ate better for me.  His weight percentiles were already dropping.  My beautiful baby needed me and as much as I loved my job, I loved him 20 times more.  I turned in my notice and left at the end of that month.  Here we were – my boy and I – and we were going to work through this together.  Once his feeding was under control – at the time, we thought it was reflux so I anticipated it would be a year – I would consider reentering the workforce.

Needless to say, I’m still awaiting that day.  We’ve since added a litany of things that we’re “working on” to that list underneath “feeding issues”.

Fast forward to 3 years later.  Being an autism mom has become my full-time job.  Jack’s schedule is more packed than mine ever was as an engineer.  He goes to no less than 3 hours per day of special needs preschool (including ESY during the summer) and 1 – 2 hours daily of DIR Floortime (depending on the day), plus he does the following weekly: 2 – 1 hour sessions of speech/feeding, 2 – 1 hour sessions of OT, 1 hour of PT, 1 hour of special instruction, 1 hour of a social skills playgroup, and 1 hour of a special needs music class.

I joke that I live in my car.  I also joke that the only adult conversation I engage in most days is with my son’s therapists.

Clearly, we live a busy life.  We see progress with this intensity, which makes it all worth it.

Yet…there is still a part of me that feels, for lack of a better word, worthless.  It creeps up occasionally when I hear former colleagues speak about projects they’re working on, or when my husband talks about the latest case he’s working on.  For such a large portion of my life – I’ve held down at least a part-time job non-stop since I was 16 – my worth had a dollar-figure attached.  I pulled in an income.  That was my contribution.  I got performance reviews and tangible evidence that I was doing a good job.  I was a good worker.  What I did made a difference and was appreciated.

Really, until the past few decades, it seemed almost assumed that being a mother equated to staying home with your children.  I’m sure that many of us grew up in similar situations – with mother staying home, cooking dinner, shuttling us kids around.  I never questioned that role – or her worth – as a child.  It was just what moms did.  Of course, my view of the world was also centered around many of the activities that involved my mom, like dinner.  Or Girl Scouts.  Or having a friend over to play.

Times change.  My view has changed and evolved beyond that of the 8-year old little girl who was preoccupied over whether mom was serving meatloaf (yuck!) or pork tenderloin (yum!) for dinner.

I know that my presence in my boy’s life, both as an advocate and mama/therapist, makes a difference in his world.  I can tell myself over and over that it does, but I still cannot escape this feeling that I am not contributing enough to our household.

What do I do?  If I can’t contribute to our household, I stay busy in other ways.  I volunteer for anything and everything.  I reach out to other special needs mamas and offer to help in any way I can.  I sign up to be Room Mom in Jack’s PSE class.  I keep busy, I train for marathons, and I don’t stop even if my hair is on fire (though a recent fractured toe has forced me to take it a bit easier).

I manage therapy schedules.  I call insurance companies.  I keep impeccable records.  I do Floortime as though my life depended on it.  I throw myself into sensory diets, engagement, and communication strategies.  When I’m not physically doing it, I’m reading about it – constantly perfecting it all.

So, why don’t I feel like I’m doing enough?!?

That feeling of not contributing financially – of not advancing in a career – still plagues me.  I would not go back to work even if I was offered my old job on a silver platter, because I know I’m in the right place and that this is where my boy needs me to be, and I’ll be here by his side, driving the car to therapy and fighting until I am breathless, as long as he needs me.  Still, I want to have worth – I want to feel like what I do contributes to the overall well-being of my family.  More than 3 years into being a stay-at-home mom and I cannot seem to release my old ideas of what determines my self-worth.

Special needs stay-at-home mamas – and dads! – out there, I put this to you.  After leaving the workplace, did you struggle with feelings of worthlessness?  What do you do for you to help you feel valued and appreciated in your new role in your family?

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