Some things just never get easier
I have logged back in to write today as we come to the end of lockdown 3.0. I just saw in my unpublished posts my thoughts about lockdown 1.0. Hmmm. I might publish that one day!
Today's topic feels like something I have written about before.
Over the past few weeks, Ryley has been undergoing assessments. These assessments are necessary in order for us to receive adequate funding under the NDIS.
Long story short, Ryley's last NDIS plan has failed to provide the funding he needs in order to participate fully in the things we had planned for his transition out of school.
The whole process has felt a bit messy.
It started with me not being listened to. This is despite my strong, knowledgeable-of-systems-and guidelines voice. No blaming or shaming here. It just is as it is.
However, for those that know me well, know that when you try and 'quieten' my voice, I will only speak louder. Especially when it comes to advocating and speaking for those that can't.
As expected, Ryley has needed to go through 'functional capacity' assessments. This is basically to 'prove' how disabled he really is so he can get the supports he needs in order to live his best life.
No matter how many times I have been through this, I have come to realise that it still can hit you like a tonne of bricks.
There are a couple of harsh realities that have smacked me in the head this time round.
1. We provide active care (so constant supervision, all self-care, all his needs) for Ryley for at least 18 hours per day. The only break we get is the actual hours he is asleep for. That is fairly huge. I don't think we have ever thought to calculate that out in real time. I mean, who would? It's just what you do, right? That's not to say that we do that every single day, because Ryley attended school, and he currently attends a day program. But the bottom line is that he needs one carer specifically for him, for 18 hours a day. That is a lot.
2. Ryley relies heavily on other people (ie. myself, trusted adults) to guide him through his day. Without structure, routine and predictability, Ryley is just drifting along not knowing what to do. No wonder he gets so anxious. He isn't actually able to have any control over his life without a trusted adult helping him. He also has no concept of time, so telling him that he is going out at 10am means absolutely nothing to him. Which is why he paces back and forth anxiously when he has no guidance, or has to wait for something.
In some ways, the 4 hours I have spent over the past two weeks going through the range of formal assessments has been helpful. It has validated things that I already knew, but couldn't put into a cohesive sentence. I am fully aware that the assessment process is never a positive experience. The focus unfortunately is on the things he cannot do. But I don't think I ever will get used to the fact that my adult son is so 'low-functioning'. Especially when everyday we work so damn hard to support his independence and autonomy.
But at the core of this process, there is a mixed bag of emotions. The mother guilt has kicked in and I can't help but feel like I am failing him. I know him better than anyone else. I can read him like a book and I can understand him even when no one else can.
Yet I feel like I am letting him down.
19 years of therapies, one on one support and attention, us helping him do the smallest things, and yet...it feels as though we have achieved nothing.
I just can't shake the feeling that we are not doing enough. Perhaps it will never be enough?
It doesn't mean that we won't keep trying our best. But it does mean we have some serious reflection to do. What does Ryley want? Are we completely barking up the wrong tree with the things we have set up for him to do so far? We have wonderful plans that are starting to come together for sometime in the future, but will he even want that?
Do we have enough time left to help him live his best life?
Are we just overthinking it all?
Hopefully these assessments will not need to be done again.
Unfortunately there is just not enough guidance and support for young people and their families who are transitioning from school to the adult world. I think I may to change that (I do have a fairly loud voice after all...).