How to be my friend
I've read much about how to raise children with additional needs, but nothing about being a good friend to their parents. People struggle to relate to parents in my position, but I'm not sure why. Maybe it's hard to understand without direct experience? If so, this may help:
1. Don't tell me you "don't know how I do it".
Unless you have similar experiences to mine, you have no idea what I do each day. I already know that. It's isolating, and it doesn't help to remind me. In truth, some days I don't know how I do it either, but I have no choice. All that stands between my children and a world that struggles to understand them is me. I am not a saint. I have no more powers, skill or patience than the next person. I cope because I have to.
I have many limits on my time. I cannot leave my children with someone untrained or unfamiliar. I cannot alter their routine without notice. I will drop you at the last minute if there's an issue at home. I can't talk on the phone without constant interruption. I rarely have time to shop for your birthday or cook you a meal. You find this annoying, even upsetting, and so do I. Please don't interpret my silence or unreliability as a rejection of our friendship. I don't mean to offend, but if you want to see me, you'll have to do most of the running. That's just how it is right now.
3. Ask me how I am.
I'm good at raising my kids. In fact I'm regularly told by "professionals" that I'm knowledgeable, super competent, should write a book, etc. That's great, but don't be fooled into thinking I cope that well with everything. I have prioritised what is crucial; the rest is far messier. I was asked, once, by a paediatrician how I am coping. The fact it occurred to her to ask was so unusual, and thoughtful, it made me cry. So please ask, because oddly, people hardly ever do. I will often be fine. But sometimes I'm really not, and the silence makes me feel like I can't tell you that.
4. Don't pity us.
However difficult this is, I love my children. I wouldn't change one single aspect of them. Not one. They are unique and beautiful people. Our difficulties are caused not by them, but by living in a world that is not designed for them. They are not disabled and they do not need a cure. You miss so much when you fail to see this. I will be very angry, very quickly, if you make no effort to understand them.
5. Be my friend.
Your lives, struggles and happiness are important to me. You may feel your complaints are trivial in comparison, but that's not how I see it. Tell me your stories. Let me join in. You are not imposing on me, you are giving me another world, another connection to bring me out of myself. I can't be your friend if you don't treat me like one.
I hope that helps you to understand parents like me. We have additional needs too, it would seem.