I.D. is not ABI
Apples and Oranges, it is often that people will assume all people with Brain Injuries are idiots or in some way Intellectually Disabled.
(I.D.) to be fair, it depends if that person was an idiot before they got their ABI or how long they were in a coma (if that is relevant) No idiots ‘here’ I promise!
One of the people in my ABI network had a rant the other day about an organisation I’ve only heard of recently.
There was no background for why I needed to hear the rant, but one of my fearless leaders in her need to rant explained said organisation was originally based around providing services for people or carers of people with I.D. In recent times, they have expanded their services to be more inclusive (don’t we ‘love’ that word?) to cater to other disabilities.
All of this is relevant as my mother now months passed did some ‘training’ with said organisation where there were only 11 other ‘carers’. The training was for how to do the application for the funding for NDIS. The training was 2 days a week over 6 weeks and mum travels (unfunded) 3 ½ hours each way to do these things. She generally stays an extra day and by the 6th week she was here a whole week.
By the last week, we had really had enough, to be fair, mum has a foot in both worlds. When she’s home, she doing “her stuff”, but I’m sure it plays on her mind what I need help with. When she’s here with me, she’s mindful of being home to work and make some money.
Like a Rockstar, my mum might arrive at midnight and she leaves so late a few days later, she cranks me when she gets home and it’s 3am. If she doesn’t ‘crank-me’ I worry. I’m generally still awake anyway.
When Mum’s down, she is always very tired, she has her head in a book or culling emails as until recently, she has had 3rd world internet access where she lives.
No, really when my younger sister and mum are rarely visiting, they have their heads in their laptops and they are like two teenagers (67 and 28-year-old teenagers) and while I’m on it, now my mum has the NBN now, so I’ve lost one excuse not to go home at Christmas.
Anyway, I digress.
The training my mum participated in was with eleven others. I didn’t understand why I wasn’t allowed to attend also. I do manage all my own “day to day”, all my own accounts and dealings. But it became more obvious when mum explained to the other eleven people were carers for ‘kids’ with ID. Varying ages, from Primary school age to my age. But severe ID with complicated and multiple issues, including ‘PIKA’ – type issues.
No eyebrows, eyelashes, no whiskers on the cat – poor cat. Bad! Bad! Bad! Complex issues. Did I mention I live by myself?
While mum was down, she would constantly point out to me that I had to ‘act’ more responsibly in public, because the Disability sector and people with disabilities are being disrespected and I therefore had to carry myself in a way that was beyond reproach.
If we were out shopping together, I might do a little grumpy ‘pout’ about something (I’m not beyond a little grumpy pout on occasion) but mum would growl at me and scold me.
“Remember what we talked about? Well, stop it!”
Yeah, that shit!
So, my point if you stayed with me is, when I found out the organisation in question was from an ID background it explains why mum was treating me less like someone who manages everything for myself.
Of course, I really now feel more for those with ID and how they get treated.
Ironically, when I’m out and about with my Carers, we chat all the way around the supermarket or wherever I have to go. Whatever topic we are discussing, we will put a ‘Pin-in-it’ when we have to stop and focus on a purchase or product or whatever else.
And then we walk to the next shop or location and the previous discussion continues.
If I’m telling my Carer about a topic that is a bit less – public consumption. I abbreviate to make a point and at times I turn my head toward them to deliver the punch line, so only they hear it.
They often burst out laughing and I can’t help but smile and this is often what people see of me when I’m out and about.
This is one of the huge differences between family and my carers. My carers are only concentrating on the moment. I know they get paid to be there with me, but we are engaged and however their day started, going out with me cheers them up. Whatever stress or drama they had going on earlier, I manage (without intending to) to take their minds off it.
I think this is my gift to those people who allow themselves to be immersed in spending time with me. Of course, I attempted to explain the difference, I found in my mum dealing with me when she’s attending this training and scolding me.
“How dare you…….. on how I choose to help you!”
That hurt.
Truly, this is why I blog!
I hope you can tell my mum and I love each other, however we often do better apart…
PS Meimi
Hell onWheels/Life One Handed 