There was a day recently when I was feeling especially tired and overwhelmed. It was one of those days that had too much squeezed into it. None of the items on my to-do list were particularly difficult; there were just too many simple but time sensitive tasks squashed into a fixed period of time. I’m the kind of person who needs a lot of margin in my day. I need lots of time to just be, especially if I want to achieve any level of emotional maturity and self regulation, which everyone who knows the real me agrees is for the best. But this day was very short on margin and my ability to pretend to be an emotionally mature, self regulated adult was reaching critical levels. I knew that I was in desperate need of perspective but I just couldn't seem to find it.
Then, in the middle of this too full day (when my ability to adult had ebbed to a dangerously low level) I had the pleasure of attending an Autism Queensland NDIS information session. At which point, perspective found me.
The NDIS, in case you don’t know, is Australia’s National Disability Insurance Scheme. It’s a scheme that marks our country’s willingness to increase support for people with disabilities. At a ideological level it is a brilliant step towards justice and compassion. At a practical level it’s new and it’s huge and problematic. Amongst the problems is the hard reality that not everyone with a disability will be eligible. This is perhaps especially true for people with ASD.
I don’t know that I’ve ever been in a room with so many frustrated/sad/scared/defeated people before. Hence the perspective. William is actually doing pretty well. He does have needs and I am concerned about his transition to adulthood. I don’t have all the skills or support that I need but in the big scheme of things we’re doing okay. We will be okay with or without help from the NDIS.
Many parents are not. Many families dealing with disabilities are stretched to their absolute limits, physically, emotionally, financially. The inescapable truth is that there are too many needs and not enough support. This is not a problem with an easy answer. The Australian government is making a valiant attempt but there’s no way that they won’t fall short. There will be a lot of hurting people left to struggle along on their own.
I don't know how to change that. But I do know that I can do something.
As a concerned citizen and caring friend I can help those close to me who might be feeling very alone and unsupported by holding space for them. I can suspend judgment and extend the gift of an empathetic ear. I have learned to leave the “shoulds” out of the conversation and instead I try supporting and encouraging them to take care of their physical and mental health as they continue to do the very best they can. I know that I don’t have to have solutions, it’s mostly enough to validate their struggles, to let them know that I see their pain and that their experience matters. I know this because people have done this for me, and it helped.
If you know people who are struggling and you're lucky enough to be in their inner circle, there’s also nothing wrong with offering practical help. Doing a load of dishes, sweeping a floor, delivering a meal or a cup of their favourite coffee, these are all very good things to do. People who are stretched to their limit don't always have the ability to ask for help. Just tread carefully, not all help is helpful, if you know what I mean and you definitely don't want to do something that is going to unintentionally add more work to their load.
Back to my bad day and my need for perspective...finding out more about the NDIS and knowing that other's have greater struggles than my own didn't diminish my own struggles but it did help me to see that I am not alone. And not feeling alone is a very good thing.