“Honour the autism”
by kat1616
An autism specialist advised me today that we must “honour the autism” in a review meeting. We were having a long drawn out conversation about my son and an impending behavioural plan in the school. I was fully launched into a bit of a rant about why they were rewarding a tantrum on carpet time by letting him play with his beloved Lego.
“…but we must honour the autism” she looks at me searchingly. I open and close my mouth.
That shut me up. I am stumped.
I finally rally after a very long awkward pause. Six eyes penetrating. I’m not sure I want to do that I say hesitantly. A million things whirring around in my head. I know it sounds awful somehow but I buoy myself on with cries of “it’s the truth, the woman is being honest (me) at least even though she feels judged. I would do anything to honour my son but no I don’t think I want to honour the autism.
Its made me think a lot. It’s made me quite cross. Then it made me sad. I put on a brave face but cried all the way home.
What the hell is this autism that we attach to a person? I didn’t want it attached to my beloved son and yes I would like to unattach it if I could but apparently it’s a part of him and it’s not going away. Yes I hear you… it’s not going away.
Do I love it or fight it? Is it my son, part of my son or inflicted upon my son?
Yes I know that me not loving this autism in my son is offensive to those living with its label. I hate that maybe enough to shut up for good except something’s instinctively not bloody ok about it for me. Maybe I am shallow and narcissitic and cannot bear to contemplate my sons life being different from mine, I can see that as a possibility. I’ve been guilty many a time of worse human idealising and frankly crazy behaviour so believe me I know it’s a strong possibility and I could happily accept to move forward but it’s a hard pill to swallow for a parent. It brings fear for the future and anxiety about the past and the worst – failure in the present. Failure to meet my son where he is at.
Actually I can only talk for myself and not much has happened before in my life that makes me question life so much as this journey. Not a harrowing suffering death of a parent, overcoming an eating disorder, birthing three children, businesses launching and failing blah blah. I am very aware that a lot of people are very sure of exactly what they are talking about. It’s pretty amazing just how sure I assure you. I just wish I could choose one of them to believe in and relinquish my captaincy of this ship out at sea.
Just when I think I might be getting somewhere – forming an opinion, a direction, sure that we are doing the right thing, something is helping, is working – I get dumped out at bloody sea again and have to try and navigate myself back to the safe shores of sanity…
Thanks for sharing your voice from out in the deep. Must reblog!
There is no one way to view any situation. This special parent shares her hopes, dreams, and anguish as she parents a special child.
Thank you. I’m honoured you would call me a special parent when I feel anything but! Its special to me that you see something worth sharing…