unitedinsite

Month: October, 2014

As long as he is happy…

Well as long as he is happy… This is said to me often about my 4yr old son Canon who has autism. It grates on me. It misses just so much, boxes up our experience with a bow and gives it back to me tidy, nowhere to go. Conversation finished. Superiority established. Wow.

I think i probably would have said it before I had experience parenting my son. Bare with me with this because I’m working this through. Someone i really love and respect said it to me this week and because I was safe I became impassioned. No I cried, that is not enough. It’s not enough for our children to sit vibrating in the corner, spin round the room, grind their teeth staring at nothing humping the floor all day (yes my son can do all 3) everyday because this is our son and we want more. He is happy as Larry checked out and oblivious to us. You wouldn’t say as long as he’s happy if he were on a class A or if he had another physical disability. There is something I feel about the word autism that invites dismissal and patronising behaviour. To the autistic and the parent. It’s interesting. Maybe we think its the parents fault, it might be and we’ve read articles to the myriad of reasons as to why it might be. To the autistic we presume complete incompetence or savant. Its confusing. AND. My experience is all the in between.

I get that the most important thing, the best thing in life is being happy. Maybe he will be happy or maybe he won’t. Somehow though what I hear when you say that is no hope. He is beyond the normal ups and downs, so disabled that he is going to smile through life and not feel the journey like me, the agonies and of course the ecstasies.

As long as he’s happy.. This is what I actually hear:

Why are you speaking? Lets stop. I’m not interested.
Back to the important things…
God forbid you tell me it’s hard you selfish woman.
It doesn’t matter what he does.
It doesn’t matter what he learns.
Let him sit in the corner rocking all day.
I don’t see your struggle to work out this unplanned journey at all and frankly I don’t care.
I don’t see you’re effort to understand and help your child because its so simple.
I don’t see the epic journey you have made from victim, through fighter into loving acceptance and trying to presume complete competence for a child no one else really cares about or thinks capable of much.
I don’t see the epic journey your child is making trying to adapt to the world they don’t understand day after day after day.

What i really hear is that you don’t care to know more.

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Exploring the magical…

“Yes you can have it all but it will be messy” Nora Ephron.

I love that quote. Hallelujah ain’t that the truth. My truth. Or possibly more apt for me right now is you can try and have it all and it will be messy. My children, whose needs come before my own (what a relief), making a living doing what you love – that’s a blessing slowly coming to fruition, the heart in the home (daily work in progress) and a relationship 10 years old yesterday that’s sadly passed unmarked, uncelebrated because its not a priority and you are both tired. Awww. A fantasised life that’s not your reality explored, agonised and shelved again today. Dreams of a magical existence dragged down to the un magical feeling present.

Is wanting to feel the magic of the world as much as humanly possible completely unrealistic or really sensible? Does what go up always have to come down? It sounds a sensible option to me but it isn’t very realistic and completely incompatible with the daily grind, the drudge of life. I find it enough to just remember to will it – the magic I mean.

Remembering to be vulnerable, be truthful, be generous and most of all see it in those that have lost sight of it will keep it alive in my heart. To keep looking for it passionately. To see the magic of our existence and experience as a beacon of hope in front of me at all times or as much as possible.

I will remember that tonight and be grateful for all the magical things that have happened in my life. I will be grateful that I can entertain having it all. I remember those that can’t feel magic and wonder tonight. Me included but it’s always there I know that so God give me the will to feel it.

What is freedom?

There are things you should do and things you shouldn’t. It depends where you are from what these are probably but some are possibly universal. Instinct should never be ignored, how many glorious things are lost because we are trained away from even knowing let alone following our instinct. The fear is us being feral. Who wants feral children or adults? Like animals? Better than zombies so me probably. It’s a fine line – tricky to navigate. When does one push through and extend out of saying what you are meant to say, what’s safe, tried and tested. Everyone has got so good, so right on, it’s lovely but argh say what you feel, be who you are. So boring. Maybe it’s just in my little life right now this feels really relevant.

My kids don’t really roam free. Where to? we live right in the middle of London. They don’t even want to go out alone. I did when I was 8. I did all sorts of crazy stuff but I had a rebellious older brother which probably helped. I’m going to make my eldest walk to the shops on his own. Tomorrow. This is ridiculous. They don’t knock about, run wild and free without an adult nearby. So sad. So safe.

I don’t worry. They are safe ferried around by me. So instead I worry about money, mortgages, careers, love, blah blah and none of us are free.

Our lives aren’t getting free-er (is that a word?) they are getting more fearful and lonely in every which way you look at it. I’m on duty in this house, I am duty bound to make my kids roam free. I am also challenging myself to speak the truth, my truth, my feelings and sense. It’s epic. For me anyway. Trusting my instinct and going for it. Taking the risk.

One life and all that.

Tomorrow I am going to say to my eldest son – speak from the heart and speak your truth. Never feel afraid it’s all you have and if you don’t value it no one else will. Eleven if you get in trouble at school. Gasp.

I want to feel freer, lighter and abundant. I want it for my kids. It’s a work in progress, it will involve life changes. Good. Start tomorrow.

Sing it loud

I watched my little boy, with his fellow class of 8 year olds sing this song in the local church and it made me well up…
It was a bit like this but better because it was my son singing with all his little heart:

Finding perfection

Love this post on love…

I was just about to blog someone else’s story just now that has deeply troubled me this weekend. But it is not my place I realise and so it is deleted. I feel sad because I know that through the real experienced shared stories we connect. My wish to be of some service to someone i love who is facing an unbarable choice has agonised me and I have had really overwhelming feelings that I have found hard physically to sit with. Life can be pretty bloody agonising and the truth of this situation was messy, fearful and harrowing. I have come across a few situations this year where I am opened up to someone’s heartbreaking experience and am compelled to extend and reach out. I am not afraid anymore of difficult things, experiences, thoughts or feelings. I am not afraid of getting it wrong. I just need to be there and maybe even remember to channel some warm golden light – through me not from me. I needed that. I still need that. I also need to remember the darkest hour is that before the dawn. Light comes after darkness and that is our shared condition. After suffering follows peace, the cycle continues we all live it to varying degrees.

But whats dawned on me as i write this (which is why i do write this because it helps things dawn on me) is that I really want to remember to not live my life in a manic busy flurry so that when someone I know is suffering I am not too busy i cant make them a meal so that they eat something nourishing. Something I often forget when furrowing my brow and thinking what to do or say. It’s one of the little things done to honour our times of hardship and something I was struck by in Beirut, the act of sharing and giving homemade food.
It is quite remarkably beautiful.

So even though I have a crazy day tomorrow I will make time to cook a lovely meal for my family and my dear friends who are suffering. They need it practically and I need it spiritually.

Is it just me…

I have noticed a few things recently..

The media keeps referring to things but not actually really communicating – to me the layman – what is actually going on…
Isis, Israel, Rotherham, Ebola, Ukraine.
I keep hearing or seeing reports around the crisis in IRaq, the scandal of Rotherham but I don’t feel them connecting with me -why not? Is it just me? Is it possibly the ego of the media wanting to be ahead of the curve so it’s already become a thing- the Rotherham scandal – it’s already being analysed and placed in a context but I am not up to speed and having a hard time finding basic articles that will just tell me what is happening? Or happened. Yes you are very clever, probably way cleverer than me but I dont think I’m stupid so can you just report things properly please so I can understand them? I would like information not always opinions!

Also while I’m on the rant I can feel a real shift in my world, in myself and I see it in others. Intolerance. Intolerance of others, their differences and challenges. Was it always like this? Israelis are greedy, Hezbollah are crazy, Isis are lunatics, Russia has gone mad and China is coming whooohahaha… Everyone is out to get us and we’re f’d so better bomb the nuttiest. The Isis furore is unbelievable. We don’t trust anyone anywhere now.

Syria was fine to mass murder with chemicals but not with knives, that’s it we’re going in. They have those weapons of mass destruction, yes those ones we have, oh and our allies, who have actually used them but we dont like HIM so he cant have them. Oh yes we are a bit f’d but not for the above reasons but because we just can’t play nice even though we learned to at school. Well we did in North London : )

Also political correctness is not cool anymore. Thank God. I have never really approved, its boring, mind numbingly dull, be nice, dont speak you might offend someone. god forbid! they might never get over it. But all we have done is just supress what people think and feel, how can they and us move forward?

AND. Nope I will not state my religion or ethnicity on your form it is not relevant. No I don’t need an interpreter (except when I read or listen to the news ; ) but I can’t find anyone who can work out what is going on either). No black history month is not cool and keeps victims victims. Inclusive history please where we get a good grasp that in every race there has been slavery and exploitation, that we have all behaved unbelievably badly in the past it is not race specific. Lets not keep burdening our children please they don’t need to carry the burden of ancestors long gone.

But let’s teach that there is hope, most of us do not want to treat others unkindly, we are evolving. It is difficult, we are a tricky, prickly, intolerant bunch us humans. God bless us.