In my family of eight, six of us are neurodivergent, five have diagnosed disabilities. Our two Autistic kids are homeschooled. Two of our kids go to local schools. The youngest is not old enough for school yet, and our oldest is in tertiary education. Things can be quite hectic around here.
I generally don’t broadcast our struggles publicly because…. well, they are ours, and the kids don’t need to grow up to see me whining about parenting them all over the place when they grow up. But for the purpose of this article I’m going to go ahead and say it’s a tough journey supporting a large family with so many varying support needs. I do a lot of appointments- both for myself and for the hubby and kids. I do a lot of supporting and organising supports for different peoples needs. I also choose a level of involvement as an activist/advocate. Most nights I go to bed thoroughly worn out and worried for the future.
Is my life harder than yours because I have family members with disabilities? Maybe. Maybe not. How would we know? You don’t live my life and I don’t live yours, so how do we tell who has a harder time?
You might think that because of the complexities within my family things are harder for me. Or you might think that your family is more difficult than mine. You might think that because I don’t complain much publicly I have it easier and my kids are not as disabled as yours. These are all assumptions that you are making based on what you think you know about me and my family. They are based on what I choose to present to you in this format, what I am happy for you to see. Some people I meet online like what I present and some don’t. Feedback I receive is both encouraging comments and angry name-calling comments.
My good friends know me differently than those who know me only through my blog. They hear about the really hard stuff and understand my struggles. They know my kids well and are generous about accommodating their needs. They are easy to be around, tolerating me at my worst and celebrating the highs with me.
People in my wider local community probably have a very different view of me than my good friends and than people who know only my public face. They see me day to day going about my business….. shopping, school drop offs and pick ups and all that. I know that some of them think I am a grumpy person who doesn’t care much for other people. I know there are people who avoid me and there are things I don’t get invited to because of this. I’ve been accused of nasty things and been called unpleasant names.
They are working on the assumption that what you see is what you get. Because I don’t air all our family struggles publicly they assume I am rude or antisocial, rather than that I might just be having a full on week. They don’t realise that sometimes I am just plain too tired to do conversation with people I barely know, and that if I were to try, the only things on my mind that I would talk about are things they don’t understand and can’t relate to.
They also don’t realise how lonely that it can be, constantly in a state where I have to ration out my energy by choosing who I make an effort to speak to so that I have the required energy to be available to my kids through the afternoon. I don’t fail to converse with people I pass by, or turn down invitations because I hate everyone and don’t want to have a social life…. I do it because I don’t have energy most of the time to be able to manage small talk with people who don’t know me and don’t want to know what my life is actually like. Sometimes I don’t even have energy to talk to people I do know, and this inability to be able to keep up with social expectations and conventions can and has lead to me losing friends. But people assume what they assume, and so on it goes.
Which I suppose to some sounds like a big whinge! I must admit it feels uncomfortable sharing this much here, but I am doing it for a reason. We all know someone who is supporting a person with extra challenges of some sort. Neurodivergence and disability is around everywhere, and here to stay…. so there are plenty of other people out there who feel the way I do. They might be parents of an neurodivergent child. They might be a neurodvergent adult. They might be someone who has a disability of a different kind. So I’m putting this out there to try and let people know….. assumptions make a mess of things.
Please, if you regularly see someone going about their business who might seem a bit strange or distant, or like they are just keeping to themselves and there is no really obvious reason ….. or maybe you know they have kids with extra support needs, or have a disability themselves….. don’t just assume they are unsociable or not interested in friendship.
Say hi. Offer them a smile and the chance to chat. Ask them if they need anything. Let them know you are there.
Invite them to things and tell them you understand if they can’t come, but you want them to know they are welcome. Tell them it’s OK if they can’t stay for long, but you’d love to see them, and offer them the option for you to set up a quiet place for their kid (or them) to chill if they feel overwhelmed.
There are lots of things that you can do that can make all the difference to someone like me in forming and maintaining friendships. They aren’t difficult to do, but will make all the difference to me, or someone like me. Those things might be similar for each person, but will vary some too, so if you know someone like me…. ask them what they need to make it possible for them to feel included. Don’t be offended if they say no thanks, despite your efforts. Sometimes I just can’t, and it’s got nothing to do with anyone else…. I just need quiet time.
But whatever you do, don’t assume.
Everyone lives their own lives. We have no way of knowing who might have things a bit tougher than us. Be gentle. Be generous. Be gracious. Don’t assume.