Hubby took this photo when he went to the local BCF to buy some rope. This guy was parked across 4 disabled car spaces. Even Hubby couldn’t believe the audacity of this guy.
I don’t quite get it…
I don’t think I have ever looked at someone else’s child and truly wished they were mine.
So why do people feel guilty because they have neurotypical children and we don’t?
Why would they think that I wanted their kids for myself or wanted their life for my own?
I remember friends talking to me about this not long after our baby girl died. They were worried about inviting us round to dinner for our regular Friday night get together in case their kids made us feel bad. I explained they wouldn’t, we love their kids, but they are not our kids, they don’t make us long for our daughter, our daughter’s absence makes us long for her – nothing else.
They got it, they are smart people and told us after talking about this issue they realised how ‘arrogant’ their notion was… as I said, they are smart people.
I know we have exacerbated the situation for our ‘non-coping’ family and friends with the outcome of our subsequent child ending up with a severe brain injury… but I just can’t get my head around this ‘guilt issue’?
It’s a ‘Catch 22’ situation. You are guilty at the concept or connotations you have of how the parents of the child with the disability are living so you stay away.
You don’t get to know the child, you don’t get to see or experience the joy they bring, you don’t get to lend a hand if the parents need it, you deny the parents (your friends) your friendship, you deny them their former life and then, because you are no longer involved in their life, you think their life must be really bad – it’s not.
I don’t feel I should make those struggling with their ‘guilt’ feel OK about their shortcomings. They disappoint me and it is not because I covet what they have – mostly I am sad for what they don’t and who they’re not.
They are missing out on a whole world of good stuff and so are their children.
I think ‘Abloid Guilt’ keeps you stupid – they need to get over themselves, over their ‘arrogance’.
The sooner we can get rid of the current charity based mindset in Australia for those with a disability the better.
That way those “poor kiddies with the brain ‘owies’ and their charity claiming parents” can simply be “a family”.
Maybe people in the Australian education system can stand on their heads and view this new paradigm.
Where a gorgeous 5 year-old boy who can’t talk or walk provides the strength and succour his little friends need on their very first Kindy orientation day at big school.
I like the way our kids are changing the world.
Well done Americans.
To an Australian watching from the other side of the Pacific Ocean, the thing that struck me most was the mindset attributed to Barack Obama. Because he was an outsider, not a part of the culture of oppressed Afro-Americans, it didn’t occur to him that he could not make change happen.
And the same must go for us, families of children with disabilities.
We can make change happen. Don’t even think about accepting 2nd rate treatment. Fight openly for what we know our kids are entitled to. We too are making change happen.
Yes we can.
I have a new home on the web. Please visit http://wheelyfast.powweb.com/
The link to my blog is at the bottom of the homepage.
I am green, I have no training and sometimes no clue… I am making it up as I go along.
Clearly I missed the chapter on “How to Advocate for your Child” in ‘What to Expect when you’re Expecting’, was there one?…
I devour information from PwD who speak, blog, write so eloquently about their needs/wants/dreams, but I am an abloid, how do I really know what MaccyMoo needs/wants/dreams.
I assume he wants independence, free will, ordinary experiences, laughter and ice cream for dessert.
I know he thinks sleeping (at any time of day or night) is for wimps and, should I choose to do his therapy, and mess with his ‘free will’, I do so at my peril.
He is five, he is a boy and he is my son. I am significantly more than five, I am a girl and I am his Mum.
How on earth do I really know what is in his heart.
I hope my ability to regularly exist in a ‘child state’, to consider what would have been important to me if I was a five year old boy and to strive to always appreciate a good ‘fart gag’ will stand me in good stead. Will that be enough?
We establish rules at pre-school to ensure he isn’t treated as a ‘precious, ‘special’ little boy’ but merely as a five year old boy – the kids get it, their parents might in time.
But is that what he wants or what I want.
I find it hard to pinpoint what it is that I want for him. Do I want him to be ordinary… and then… what is ordinary? I consider my upbringing ‘ordinary’ but then I loved winning at sports (all of them), I liked being better at school than the person next to me, I liked that as a kid I was in the local paper regularly for my achievements. Did everyone do this, is this ordinary?
I have struggled for sometime to work out what it is I am chasing for MaccyMoo – but finally…
I think I may have found it.
Thankfully there are people out there far smarter than me. I came across an inclusive education site – important research as we prepare for MaccyMoo starting school next year and there it was… the words I had been looking for…
“THROUGH THE SAME DOOR”
This absolutely encapsulates what I am trying to achieve for MaccyMoo – to be able to access life through the same door as everyone else.
It provides a simple answer when others ask “why are you mainstreaming him”, I now have an answer I am proud to share…
As I said, I am still green when it comes to advocacy, but I hope I am getting there.
The site I found was www.throughthesamedoor.com it is Micah’s story of his inclusive college education and regular life. Thank you Micah.