I’ve always been quite blunt about the biggest challenge of being an autistic parent to an autistic child – other people’s expectations. Dealing with other people’s feelings and opinions on how I ought to parent, or how my children ought to be, or both, has always been more stressful and worrisome than whatever was actually going on at the time (if there even was anything to begin with).
So over the years, I’ve built up walls. Strong, high defensive walls that keep other people out, so that their ways of hurting me, my children, my relationship with my partner, none of them can reach us. Most of the time, anyway.
And it feels like we’re particularly vulnerable to being hurt. I don’t know if this is common for non-disabled parents, this idea that simply because of who we are, we are surely destined to fail. This sometimes slight, but usually overbearing, expectation that we have to prove our competency, prove that we are permitted to be parents. Doubly so if one of our children is also disabled. There is always, at least for me, that underlying fear that someone will try to take my children away if they don’t approve of us, approve of who we are or how we live.
So I build walls that get higher and higher. I walk that fine line between engaging with the outside world, and refusing to engage with a world that judges so harshly. Between being visible enough not to be considered too strange (don’t take my kids!), and not so visible that people take too much notice (don’t take my kids!). Because we’re vulnerable to being hurt, vulnerable in ways that most others don’t even have to consider.
And my walls are thick now. Our family is surrounded by walls, and only the special few are granted access. I try to keep my family safe in those walls. I use myself as a litmus test for how tolerant and caring new people will be. For how open they are to people not like them. I test the waters. I put myself out there so that if (when) sharp arrows come my way, it is me they strike, not my children. Not my partner.
I become another wall.
And this wall is fierce.
It is strong, and it will not let you through if you don’t deserve it.
Hopefully, when my children are grown, they won’t need walls. Hopefully, they will be able to build bridges instead.
But my walls will always stand. They are permanent now.