WHEN IS ENOUGH ENOUGH?

Axel comes home Mondays and Tuesdays. This I can manage with help. He stays in a local care home the rest of the week. This has been going on for 4 months now. The tribunal hangs in the air for October should we fight to get him out of county to a specialist residential school far away. I don't know what is best.

It's taken time to assimilate this situation and that he is unlikely to come back. The grief of it is slow like an airless, permeating mist. I am quietened by it.

Having fought solidly for years for him and tried all sorts of things to make things better, a new awareness is dawning. I have been giving the teachers and care home a hard time as if the reason he needs to leave is because we are doing something wrong. I am now wondering whether we are all doing a good job and this is just how it is, how he is.

Is it possible I could relax in the knowledge that he is where he needs to be and we are all doing as well as can be? There can always be improvements but is this enough?

For me this is a sad outcome. Perhaps I need to accept it, stop fighting and support the group as we are. I love having him close... and so does he. That much I know.

I have always been a fixer. I have never known such a loss.

He's coming home later. My blue-eyed boy.

IN PRAISE OF MY PARENTS

Visited my parents yesterday with Axel. Not one broken thing. Amazing. A happy time. Things have changed a lot.

Years ago my parents held to their rules, would not hide things or change things... the boy must learn. 

After many pieces of porcelain were deposited into the Grandfather clock resulting in a pleasing smashing sound, my father hid the remaining ones. Axel had a fetish for the clock, made by my grandfather, and would rip the pendulum out and walk around with it. It cost £500 to fix. My mother tried all sorts of things to attractively protect it and found this simple red ribbon did the trick. 

Another trial was that Axel had a passion for my parents' choice of muesli. My mother refused him the muesli saying it would spoil his appetite. The meltdowns were tragic. 

Yesterday, Axel sat next to my mother, who'd as usual cooked a splendid meal. Axel held the massive muesli jar to his mouth and happily tipped all of it into his mouth and as far as the eye could see. Not an eyelash of stress was on my mother's face. Happy, eating together, in our own ways.

Although Axel's interest in the clock has long since waned my mother keeps the ribbon on. She wants her grandson to come.

BABY OF MINE

I went to visit Axel, age 10, in the care home, to take him swimming with the aid of two carers. I think we looked casual as we sat on the floor of the pool reception area for quite a while adjusting to the environment. Axel had brought his tickle spots with him and I enjoyed tickling him and soothing him to where we were. I think he was disappointed as his father usually comes at the weekend. He's away on holiday.

We change in the corridor as the changing room is abhorrent before swimming. I am glad I am not shy. With the carers support we got in in under an hour. Once in, we have a fabulous time. I throw Axel in, despite looking drowned he comes back for more. I tumble turn him forward and back. Today, amazing, he presses my neck. He wants me to tumble turn. I insist he vocalises for the 'three' of 'one, two, three' and I turn. He is delighted. I consumed a lot of pool water delighting my son. He has never reciprocated in this way before. I then got him under water and for the last half hour he swam as a dolphin only coming up for air. Wonderful. Without his sister we could really find OUR way. He loves the jacuzzi, eating the bubble scum. We sit in there. Silent. Together.

It then took three of us to get him out! A woman in the pool keenly helped push him out. LOVE HER. If only there were more cool, helpful players out there. Come on people. I know it looks weird but really, help and be happy. 

Back at the home he didn't want to leave my car. They provided a wonderful lunch of haloumi, avocado etc... he's so posh. We then watched Dumbo. His choice. Never have I been so keenly aware of how this is a film about difference. His big ears are a disability that convert to an asset. I queued him in with pictures that I would be leaving. At the moment where Dumbo's mother is cuddling Dumbo from her jail, singing 'Baby of mine" he bit me with a passion. He cares that I'm leaving and I am aghast that it needs to be like this. What a mess.

I love my Dumbo and yearn to find an asset.

http://www.youtube.com/watch?v=CORf1liT9cE

ROLLS ROYCE - 22 04 13

LOVE that lady in the supermarket. 

We tour Sainsburys with Axel perched in our trolley. A 10 year old non-verbal Autistic boy in a trolley, I often get asked if I know what I'm doing. Am told it's not safe don'tcha know? I gently explain this is super-safe compared to letting him out and thank them for their concern. Sometimes, in my fantasy head, I punch them anyway.

Part of our tour of the big Sainsburys includes going to the bakery section to scavenge for the toasted sunflower seeds and poppy seeds that fall off of the rolls. Axel loves them but not the roll. We use the plastic bags to be hygienic. The staff lady puzzled over what we were doing. I explained and excused us. She looked more puzzled for a moment and queried why we had so few. I explained there weren't many today. 'Nonsense', she said and shook the tray with such enthusiasm, removed the rolls and poured the biggest plunder of seeds we've ever had into a bag. Axel was beside himself with happiness. LOVE HER.

Thank you staff lady of Sainsburys.

Back home and Aurora's singing.

Happy days.

IF I HAD TO RAISE MY CHILD AGAIN - 19 04 13

If I had my child to raise again,
I’d finger paint more,

and point my finger less.
I’d do less correcting,
and more connecting.
I’d take my eyes off my watch,
and watch with my eyes.
I would care to know less,
and know to care more.
I’d take more hikes,
and fly more kites.
I’d stop playing serious,
and seriously play.
I’d run through more fields,
and gaze at more stars.
I’d do more hugging,
and less tugging.
I would be firm less often,
and affirm much more.
I’d build self-esteem first,
and the house later.
I’d teach less about the love of power,
and more about the power of love.

Anon

EXTRAORDINARY KIDS - 16 04 13

My daughter, Anusha said, 'You're very quiet these days Mum. You've stopped talking'. I explained that I'm taking Axel for his formal assessment at Priors Court Residential School tomorrow and the date for the tribunal has come through for October. Words do not describe the pain. 

She returned some time later with a picture for me and a poem. The picture was of a big bird on a thin branch with a tiny little bird nestling into her tummy and a beautiful young bird facing her. At the end of the thin branch it divided into two twigs. One was dead, the other bore three beautiful blossoms. 

The poem reads...

I'm happier with you than if I had the World,
We've shared amazing experiences as the story unfurls,
We've been through tough times and they're getting tougher,
But through darkness, light will always splutter.
It's been a long journey but we'll get to the end,
Because I love you Mummy and my love will never end.

I am so lucky to have two such extraordinary kids.

SHOULD I STAY OR SHOULD I GO? OR 'MIND THE GAP'... A RAMBLE... - 12 04 13

I am a talker. 

I use talking like dolphins use sonar, to measure the distance between me and another physically, intellectually, emotionally, spiritually, playfully. I use language to describe my 'landscape', my 'furniture', of Life and the inferences I make of it. I ask questions to understand another's. With Axel, with no language, I am out of water. It's not just the lack of literal language but the theatre that goes with talking such as gesture, posture, that subtle glance. With Axel I can not imagine his 'landscape', his 'furniture' but see the shadows cast from it, the vapour trails. When Axel takes only my left arm and guides it to only the left hot tap lever and manoeuvres it until the hot water is gushing and then carefully and slowly presses my fingers to the tap, I can not imagine the motive only experience the result. I am trying to understand another language uncertain there is one with any formula.

I am reminded of a young man I once met who spoke avidly of football to me. I confessed I had little time for the game. He fell quiet and shared that he hated football but had learnt all he had so he could include himself and have some friends.

How awake are we to why we do what we do? In this I suspect Axel is very clear. I can not imagine he presses my fingers to the taps for anyone else's pleasure or reason but his.

I do watch with wonder.

And I reminded of a workshop I did where we danced our life histories for one another by way of introducing ourselves. Scary as I found it, it was one of the most extraordinary and moving things I have experienced. We guessed each other's lives well, we come from a similar physical language plain.

I do wonder what Axel is 'saying', so much of what he does I can not read.

He is wonderful.

Am I making sense!