The idealized “mother” is a self-contradictory creature: I am, at all times, the perfect and deeply flawed mother, depending on what ideology and latest-guru you consult. It is quite simply impossible to be the perfect mother from all perspectives, and trying to be such a thing will only lead to exhaustion, guilt, and a sense that this motherhood thing has passed you by, since you were so busy trying to live up to something impossible instead of living and loving.
This feeling of constantly being judged and found-wanting, is heightened of course with a special-needs child, because the scrutiny and the ideologies are that much more intense, and the notion that you will never have done enough for your child (or done too much even) weighs that much more heavily.
Over the years my body had started to show the strain; bent over more at the shoulders, avoiding others’ eyes, a sort of defensive exhaustedness that comes from getting used to a world that judges your child – and you – because they have a diagnosis (the mere act of seeking or achieving a diagnosis being a reason in itself for others’ superiority). I noticed this a while back and made a conscious effort to change my body to better reflect the strength and pride I have for my son and myself; a strength and pride that came with a better understanding of my son, and that I’m not to blame for his autism – to not even see autism as a “blameworthy” thing.
But going through motherhood under this much pressure – trying to live up to the ideals of other mothers and other mothers of special needs children – does more than leave you burnt out and bent over. It depersonalizes you, as a human being, in a number of ways. It depersonalizes you because you spend a lot of time externally observing and judging yourself, “have I done enough, did I do it right, will she think I did it right…” It also depersonalizes you because your own identity can melt away; your own interests and desires and passions are forgotten and moth-balled. The only thing you can not feel guilty about, is the passion for your child. The only social activities you can engage in, are those directed at your child’s well-being and development.
Your existence becomes referential; to the child. You are not “Emma” anymore, you are “mother of Sam.” This secondary, referential existence is one of the few ideals that carry through most mothering ideologies: The good mother is the one that holds every personal action up to question, “is this the best thing for my child?” The good mother always follows the child’s lead and never specifically encourages the child towards the mother’s own interests; that would be called “living through the child” otherwise (as opposed to, say, calling it engaging the child in what you are best able to teach them). The good mother puts her life on hold for at least the first three years of a child’s life, since the child is so dependent and easily influenced by the powerful figure of “mother” during those years.
But what happens when it’s not the first three years? Or five years? Or 18? What happens when the child is highly dependent all their life, and there is no point at which a mother is free to “rediscover” her friends and her own interests? She’s not allowed to be resentful about this of course – who is there to be resentful towards anyway, the child who had no choice in the matter either? No, you just keep mothering, under high scrutiny, and conflicting ideals. Listening to strangers and family alike tell you that you’re still doing too much for the child, or not enough, and knowing that you best never ask “what about me?”
The longer you survive in this high-stress and self-denying state, the more it becomes who you truly are. You don’t need others to judge you because you’ve internalized the conflicting judgments. You don’t need the disapproving looks and scowls because your biggest critic is yourself, and you’ll beat yourself up worse than anyone else would dare to. You become so wrapped up in your child that you realise one day that your non-existent free time would be wasted on you anyway, because your friends aren’t around anymore and the things you used to take pleasure in seem pointless and selfish now.
There are ways to avoid this of course; there’s nothing inevitable about such a depersonalized motherhood. You can find and stick to a particular parenting ideology and be prepared to defend it against the attackers (or to ignore the attacks, potentially by immersing yourself in the relevant community of agree-ers). You can take time through-out motherhood, and from early on in motherhood, to indulge yourself and maintain your friendships. You can remind yourself that “the perfect is the enemy of the good,” and just do your best while enjoying your child for who they are, while letting them see who you are too; an enriched two-way relationship between mother and child, rather than the sacrificial martyr one-way model.
And if you can’t step back from the attack that to care for yourself would be selfish, then remind yourself that the consequence of losing yourself completely to the role of “mother” – particularly in the special needs world where that role will take everything you have and then some – is a burnt-out person who may be no good to anyone anymore. Mental and physical break-downs will just make you a burden on the people you love anyway. There’s a lesson in the burn-out that I never truly knew until I first had one as a university student who pushed myself too hard, too long, too often: Once you burn-out, it is incredibly hard to re-find that specific past passion. It’s like a piece of you is broken, and that even when it seems healed, that it’s a weak point that can’t take too much pressure or it’ll break again very easily.
I think we need to remind ourselves – in society and as mothers – that “parents are people too.” Though we love our children and value them higher than our own lives – that there is nothing we wouldn’t sacrifice for them – their well-being requires us to be well too, mentally and physically. The more dependent they are on us, the even more important it is that we look after ourselves so we can be there for them.
I know, it’s easier said than done. We get told to take more time for ourselves, but who then follows through with the support to make it happen? Or we’re given that chance to step-back, and we don’t take it because for so long we’ve been the voice and aid of our child that it’s almost impossible to imagine someone else doing what needs to be done, or as well as it needs to be done. I have no easy answers. I’m stuck in this conundrum myself. But maybe it helps to say it out-loud sometimes, and know we’re not the only ones. Maybe that in itself is important, particularly in a world where speaking out about such things is so often itself attacked, as evidence that we are falling short as mothers.