“Hope” is such a positive word, and something we so effortlessly and kindly wish upon people in hardship: “Have hope.” “There is hope.” “Hold on to hope.” But the word can become painful when something you so desperately hoped for – your own child – turns out so extraordinarily different from what you’d hoped, even when you’d thought you’d set your hopes low at the outset (“I just want a healthy happy child who can grow up to have a family of their own one day.”)
Having those hopes for your child’s – and ultimately your own – future, seemingly ripped away by something as mysterious and misunderstood as autism, is deeply painful. A sort of pain that changes who you are, because you’d do anything to not feel it again; to not go through that sense of loss and like your world has been tilted under your feet. A pain that makes you put up barriers to hope, that makes you more distant and cynical in an effort to protect yourself while you try to adjust to your new reality.
When people talk of hope that your child will “recover” or “get better,” and you know the statistics are against you of that happening, hope can feel like a cruel tease, just setting you up to fall again. It’s so hard to get your head around your and your child’s new reality, that to even contemplate hope feels out of step with what you’re trying to do in your daily life. And when people talk of hope, it can feel like they’re in denial of your reality, or aren’t paying attention to what you’re going through right now; why are they talking about hope when you’re just trying to figure out how not to be physically attacked and how to stop your child attacking themself too? In the mental and physical exhaustion, hope can feel like a waste of energy and thought; the here and now is everything, and demands everything of you.
But there’s a crueller twist of the knife, that you don’t see coming: The people who will tell you in condescending tones, that you were a bad mother for ever hoping for your child to have a normal life in the first place. That a good mother would have just hoped for their child to be who they are, whatever that may be (regardless of how hard it makes the child’s life). As if we as humans never dream of what our children might do, and what conversations we’ll have with them, and what they’ll look like, and who they’ll love; as if these most natural wonderings and hopes, are a mark of a substandard parent.
And it’s not enough that your past hope was wrong, no, you’re also a bad person for hoping your child will someday be different: that they will use verbal communication; that their stims won’t mark them out for ridicule and bullying; that one day they might be so improved that the diagnosis of autism will no longer apply to them. That they’ll be one of the extraordinary few who drop off the spectrum. Again, your very hopes mark you out as worthy of criticism.
So at once, you see your hopes shatter, and you have people telling you not to lose hope, and you have others telling you your past hopes and future hopes are inappropriate and reflect badly on you as a parent.
So you see, hope becomes a dirty word. The mere mention of it can make you cringe, because it carries so much baggage and pain and critique. A word that you once thought of as compassionate and reassuring, has become tainted with cynicism. And you find yourself reluctant to tell other parents in your same position, to have hope, because you know how redundant that can feel, and how simplistic and dismissive it can come across.
Or maybe, that’s just me.
For some, hope is what keeps them going; reading stories of others’ successes and rare outcomes gives them the strength to get through one more day. For me, I had to have the amazing successes I’ve had with my own son, in order to reach the point where I now feel safe to hope again. Everyone else’s success stories were only valuable to me for learning how to implement therapies and try new methods; not for finding that elusive and meaningful hope.
I so want to reach out and give other parents hope now too, but I struggle to reconcile that with it being a dirty word for me for so long after my son’s diagnosis. It has been four years since my hopes were shattered, and only now do I feel “safe” about rebuilding them; but different more mild and adjusted hopes, to what I now understand about my own son and about his own autism. Building hopes without that knowledge and understanding, would have set me up for heartache anyway.
I’ll say this to you then: Careful who you share your hopes with, because some will use them to judge and pigeon-hole you as suits their own agendas. If you put them out there, know that they may be misunderstood and used to hurt you, particularly in this highly charged world of autism politics. Don’t be afraid to hope, but try to keep your hopes in context to reality, and the way you can best figure out your reality and what are realistic hopes alongside, is to get to know your own child and their challenges as intimately as possible. All those gurus selling you hope for money, don’t know your child and their condition as well as you do, don’t let them build and abuse your hope to hook you in; do your research and keep a level head.
And please, don’t let others make you feel miserable for daring to hope.
Hope doesn’t have to be a dirty word.