You’re Not Failing, You’re Struggling.
May 8, 2020

I had a friend ask me how to explain to family members that she’s not being lazy or unmotivated.  Her family feels that way because it seems like she can’t get “simple” things done around the house while also caring for her child (who has an autism diagnosis).  I hear this a lot, mostly from married moms. It’s obvious that single-moms have more work than time so they don’t often get this sort of commentary from family.

Instantly I knew exactly what she was talking about.  But I was having a hard time putting together words that would allow others to “really get it”.  There are several issues at play and together they compound the feelings of overwhelm that most primary care-givers of children with disabilities feel all of the time.  But this isn’t just about FEELINGS.  It’s also about the division of labor.

So first let me explain the things the family is perceiving and then I’ll work backward from there.  Family, spouses, friends, etc. feel we should be able to get more things done in a day since we are at home all day with our child or children.  And obviously, since things are not getting done, they deduce we are lazy, unmotivated, undisciplined, and/or unorganized.  What they don’t see is all of the WORK that takes place in just keeping our kids safe and pointed in the right direction in terms of development and growth. 

Child rearing is difficult and exhausting in the best of circumstances.  When that child has a neurodevelopmental challenge or other disability everything is much harder, much more intense and you quite literally never get a break or a chance to just breathe and relax for a moment.  And when I say children with challenges, I’m talking about medical complexities, learning disabilities, seizures, communication challenges, cognitive and processing challenges, behavioral challenges (such as elopement, aggression, self-injurious behaviors, sleep difficulties/insomnia, OCD, etc), food allergies and sensitivities and so on.  And then you layer on managing the teams of professionals to help with said issues and very quickly it becomes a massive project to manage.  And you are managing it 24 hours a day, every day.

Oh and did I forget to mention there might be other children, and the other roles that you fulfill such as spouse, sister/brother, friend, child to your own aging parents and let’s not forget employee as more likely than not the second parent is working either a side job for some extra cash or is employed in a ‘regular job’?

So, we have child rearing with its obvious challenges and the “mental load” that mothers carry with that.  Layer in the intensity of special needs parenting.  Add more “mental load” to include watching and analyzing all growth gains or regressions, researching conditions and solutions, learning your child’s language and serving as their translator to the world, advocating for equal access and accommodations with the school systems (and medical systems), managing financial resources (insurance, Medicaid, grants etc.), looking for new opportunities that your child can participate in, preparing for those activities (planning, food, therapeutic support scheduling, generalized worry that you are doing the right thing), constantly working to avoid stress triggers or remediate behavioral escalations, teaching the same basic life skills for months and years on end, calculating risk/reward for anything and everything all day long, keeping track of due dates for plan renewals/IEPs/updated therapeutic goals, frantically searching eBay for very specific products like out of production toys or specific style shoes, and a million other things that represent parts of the whole for this project we call Raising Humans.  I haven’t even touched on the topics of simply playing and connecting with your kids or creating space for your own self-care.

By now I hope you can see that we have a 2-ton load that needs to fit into a gallon jug.  And no matter how efficient or brilliant you are, there’s no way that math works.  Honey, you aren’t failing, you are struggling.  And the people that in your life who think you are lazy or unmotivated cannot see all of the things you ARE doing because they are not the ones carrying or assisting with the responsibility that comes with special needs kids. 

Your child’s life comes first and if there’s room left in the day, maybe a bathroom will get cleaned.  Or you know what?  Maybe you’ll just sit on the couch for a few minutes to watch some stupid TV show because your body and your brain and your spirit need the break.

I took an informal (and very unscientific) poll about division of labor in a 2 adult household and the results were not surprising to me.  By the way, these were all moms that offered to answer my survey even though I just asked a general question of everyone and did not specifically exclude dads.

What percentage of responsibility falls to you for:

Attending to and engaging child               80%

Planning and preparing meals                   82%

Shopping for groceries                               79%

Cleaning                                                        72%

Schedule management                               91%

COVID or home schooling                          87%

Work hours (outside income)                   26%

Medical management                                 95%

Social coordination (child and family)      89%

Behavior Management                               86%

I’m going to go out on a limb and say the physical work of the household isn’t something that burdens mothers so much.  It’s the lopsided division of labor around the 1:1 care that our kids require and the supports that are part of their life.  It’s the lopsided division of labor around dealing with behavioral challenges.  It’s the lopsided division of labor around managing a child’s complex medical needs.  It’s the lopsided division of labor in the hands-on child-rearing.  When you have a child with a disability, overwhelmingly the responsibilities associated with that fall to the mom. 

Each of us comes equipped each day with the ability to make decisions.  When we run out of energy mentally to make decisions we hit a state called Decision Fatigue.  In Decision Fatigue, humans will typically do one of two things.  1. They make risky choices or 2. They make no decision at all.  When the body and brain receive some rest, decision making can start to happen again.  If you get little to no rest, you deplete your “decision-making capacity” over time. Which means you hit the Decision Fatigue state earlier and more frequently in a day.

When we see a person making risky choices or just not doing anything when obviously there’s lots to do, we tend to jump directly to “lazy” or “undisciplined” or “unorganized”.  The brain is hard-wired for survival and it knows you cannot operate balls to the walls 24/7.  You need to rest and if you won’t make that choice consciously for yourself, your body/brain will FORCE you to rest in some way.  If we don’t understand this physiological certainty, we start to beat ourselves up about being lazy and not being able to get anything done.  And the cycle continues of physical and mental exhaustion.

We can make amazing plans and create lists to keep us on target but if the child is having a crisis, we need to attend to that. And our kids have crisis moments daily. And sometimes that can take hours of our time – just keeping them calm and safe.  Pretty soon it’s dinner time and nothing on the list has been done and nothing has been prepared for dinner.  So yeah, it probably DOES look like laziness to someone who doesn’t fully understand the weight of special needs parenting and the responsibilities that come with that.

If you are tired just reading this, we haven’t even discussed the COVID responsibilities that are all in addition to our “normal”!

So back to the original question – how would I respond to family and friends who just think I’m lazy?

“Thank you for noticing that it takes an enormous amount of energy and effort into keeping my child safe and healthy.  Yes, I would love for you to help out with the things that you can see that also need attention but because my child comes first, I haven’t been able to get to that just yet.”

And if they don’t catch the nuance of that, you can give them a copy of this article, and maybe they will start to understand the invisible load that you are struggling (not failing) to carry.  ~ Amy Y.