Just a few weeks ago a new study confirmed that the benefits of breastfeeding have been overstated. After reviewing decades of research, the researchers say that previous claims to better outcomes and other advantages of breastfeeding over bottle-feeding are not true. Studies up until now, they say, have failed to capture other contextual factors leading to better or worse outcomes for kids, and have failed to acknowledge that breastfeeding may be “difficult, even untenable” for many women.

As one friend put it on Facebook: “Now that the benefits of breastfeeding shown to be overstated, what new thing will mothers feel inadequate or guilty about?”

Exactly.

It’s a dog-eat-dog world for mothers, set up in such a way to make us feel inferior in so many things we do. We’re too rushed, too angry, too busy, too distracted. Not mindful enough, not organic enough, not tech savvy enough, not zen enough. Working too much, drinking too much, nagging too much. Caring about the wrong things. Not engaged enough. Over-controlling. You didn’t sign your kids up for enough activities, or you’re over-programming them. You aren’t doing enough math homework. You don’t give her nightly baths. You forced your kid into ballet classes. You let him give up piano lessons, or you wouldn’t let him give them up.  You give your kids tap water. You cook with processed cheese. You’re a tiger mother. You’re a stay-at-home mom. You’re a working mom. Single mom. Helicopter parent. Jellyfish parent. You’re pushing too hard, or not enough.

Women endure scrutiny in many of the roles they take on but motherhood is the one role everyone feels free to label, critique, and find fault with.

I sent Georgia to her first day of summer camp two years ago with a sandwich made with completely mouldy bread. It seems impossible, but I didn’t notice. I packed a lovely green bread sandwich and sent her off for the day. The counsellors fed her from their lunches and saved the sandwich to show me at the end of the day, when I arrived five minutes late to pick her up. Sigh.

There’s plenty for mothers to feel guilty about. Moms of kids with special needs, however, develop a whole other set of guilty complexes in addition to regular, run-of-the-mill guilt. This topic interests me enough that it indirectly is one area of interest for my own academic research. There are several different kinds of this very specific guilt – and two in particular that are of interest to me.

The first I call “Looking Back Guilt” and the second I call “Looking Forward Guilt”.

“Looking Back Guilt” begins the moment you are plunged, headfirst, into the health care system because ‘something is wrong’ with your baby. After your first few assessment visits with neurologists, developmental pediatricians and geneticists, you really do end up reflecting (usually harshly) as a mother on each and every decision you made from conception until birth. Every bite of food you ate. Every sip of coffee you took, even it it was decaf. Every lost minute of sleep, every hour you worked overtime. Every time you didn’t sit down when you were tired, and every ache or pain you ignored. Every time you forgot to take your multivitamin. Every time you indulged a craving or ate a honey-dipped donut. (For me this was a daily occurrence during pregnancy.)

Did you play enough classical music for your ever-growing belly? Were your waistbands too tight? Did you do enough prenatal yoga (or too much)? Was your partner too old? Should you have waited so long to have a baby? Were you focused on the wrong things?

Never mind the questions about your childhood and adolescence, your grandfather’s grandmother, your exact intake of sugars, alcohol and green vegetables and your views on vaccination. When you’re spending hours upon hours being asked by healthcare professionals about the minutiae of your life in order to figure out ‘what went wrong’ with your child – well, it’s not difficult to see that it can trigger some guilt.

I felt this vague sense of guilt for a long time, and still do from time to time. Mostly, I’m over it. I have stopped blaming the honey-dipped donuts and stuck with the old adage that These Things Happen. One teeny, tiny little strand of DNA gets distracted and misses its place in line and well, there you go. Looking back has its place, and there are times when finding answers helps with direct care and therapy, but mostly it’s an unkind and unproductive exercise.

Not to worry though, because once a mother has let go of her “Looking Back Guilt”, there is still plenty of the “Looking Forward Guilt” to go around! Most parents of kids with special needs are told to (and trained to) put their kids through the kinds of therapies they need, sometimes on a daily basis. For some parents, like those with kids who have cystic fibrosis for example, this is life-saving therapy – therapy with an urgency that is clear and apparent. For kids like Georgia, well, she has always needed a variety of supports and therapies: none lifesaving, urgent or acute, but all incredibly important for her development and growth.

As a mom, I’ve been trained to provide speech therapy, physiotherapy, occupational therapy, academic tutoring, behavioural therapy, and social skills training. Add to this the thousands of hours of research on autism and hypotonia and developmental delay and lack of white matter, usually done in the middle of the night. Add to this the hours of phone calls to get appointments, to schedule tests, to arrange assessments. And then there are the actual days spent in clinics, labs, hospitals, and doctors’ offices.

It adds up to a lot of energy and time. Which you are more than willing to give, hoping that it makes a difference in your child’s life. But the second you are doing something not relevant to the care of your child, you instantly worry that you are not spending enough time on the right things.

Typically this panicky guilt hits when you are sitting in a hairdresser’s chair wearing a plastic cape with your wet hair half cut. Boom. Or sitting in a meeting at work that no one else has prepared for. My time, my precious time! There are stories of parents of kids with special needs who never get a haircut ever again or who quit their jobs to be full-time caregivers, therapists, researchers and advocates for their child. That was never a realistic option for me so I figured out the balance – or I aim for rebalance when I’ve gone too far in one direction.

Even so, I do feel the strain of the maternal multitasking marathon, and the inevitable guilt when I slow down my pace.

I remember many times that guilt hitting me in a particular way when I’d forget the thing-I-was-supposed-to-say when Georgia didn’t use enough words to ask for something. She would enter the room, look at the ceiling and say “milk”. I’d rejoice that she came to me, pour some milk for her, watch her drink it, and life was great. Two minutes later though I’d groan, remembering that the therapist told me I wasn’t supposed to give her anything unless she made direct eye contact, said my name, waited for me to respond, and then asked for something with a question using a full sentence.

I remember how when she was a baby I had been shown how to engage her in purposeful play, to make sure she engaged with me as well when she was on the floor with her toys. “Don’t let her just be in her own world – make it meaningful,” the therapist would tell me. “Make a story about everything. Captivate her, make the play purposeful, increase her language and her skills, build upon it…” I would get down on the floor and Georgia would be propped against something, playing in a completely unengaged, non-purposeful way. I would try all the things I could think of, but usually ended up doing one of two things: cuddling her or tickling her.

It was great at the moment – she smelled so nice and was so soft and snuggly – but afterwards, both of us out of breath from laughing, I’d be struck with a sense of lost opportunity. Tickling wasn’t going to increase her language or build her skill set; it certainly made me feel good and wow, it made her giggle wildly. This alone was amazing to experience.

Yet those times that I did what all parents do – just play in a completely random and goofy way – I would remember I was supposed to be doing therapy. I would remember an inevitable follow-up appointment was approaching soon, and what would I say?

Sorry, no new words this week but hey, we did a lot of giggling.