Month: April, 2015

“Honour the autism”

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…

To my boys

Not sure why but I felt the need to write this letter to my sons today in case something happens to me.
Hope its not tempting fate…

The things I have learned in my life so far are quite simple and I want you to know them.
In no particular order…

Your truth is the only thing that matters, how you feel and what you think define who you are.
Share your truth, it is beautiful even if it feels ugly to you.

Do not wish you were something else, something better. You can only be you.

Do not ever be the victim. Always know your role and choices you have in your life. If you make a bad choice change it or find a way to make it count. Never ever construct a sad story for yourself as that is what you will live.

If you veer away from your essential goodness – God given to us all – and make mistakes simply ask for forgiveness, share your mistakes but most importantly forgive yourself. Everyone makes mistakes do not let it ever defeat you. But please try to recognise it and not do it again ; )

Get up every day determined to do your best. Go for it.

Never give up and never give in.

Ask for help and support when you feel alone and not great. We all need reminders and we all need hugs.

Always shine brightly, never be afraid of your own beauty, light and goodness. Your successes. Enjoy yourself literally. You get one life – go for it.

Keep people close to you who inspire you and challenge you.

Definitely keep people close who make you feel really good about yourself.

Whatever you do find the magic in it. Find a purpose to it. Do it with passion.

DO NOT WORK. Make a living doing what you love.

2+2=4 only in maths pretty much everything else makes no real sense…

Remember we are on a ball floating in the black abyss – its crazy, magical and weird.

Laugh always. At everything including yourself. Us humans are a funny bunch.

Don’t forget to dance. Like a madman. Dance it out : )

Never lose the naughty twinkle in your eye. You were born with it I assure you and my God I love it.

Look yourself in the eyes in the mirror and give yourself a wink.

Learn the language of the soul, of the eternal and of the universe – it has no words. Just a shared, sometimes painful condition. We all live it. Never be afraid of it. Read the alchemist often.

Always be kind and compassionate whenever you can.

The darkest hour is that before the dawn. Things shift and the light always seems to come back.

What goes up must come down – dont take drugs or drink too much.

Keep it simple.

Always be grateful for what you do have.

Sometimes a bit of money can solve a problem – keep some saved to throw at these particular problems.

Keep your eyes on your own plate – do not worry about what other people are doing.

YOU CAN ONLY CHANGE YOURSELF. Its annoying but true I’m pretty sure of it.

Never see pain and look the other way. Move towards it and touch it in whatever way you can.

Be generous always. Extend yourself to others. Show people that you care.

Actions speak louder than words. Empty barrels make a lot of noise

Food is a wonderful nourishing gift when someone is suffering

Come from love not fear

Life is a magical gift. I have no idea why it happens but it does

Look after each other always

You are the coolest funniest loveliest boys I have ever known. I love you and I’m with you all the way.