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!

A little thing but so useful... 08 04 13

Axel slams doors... a lot... damaging the door and whatever it hits. I fitted door stops but he loves chewing on rubber things so he kept working at them 'til he pulled them off and chewed them to bits. Then the door would hit on the exposed screw. 

This has worked!!! 

A bottle brush head screwed to the shelf. Of no interest to Axel and saves the door and shelf.

Love it.

Not feeling so merry - 08 04 13

Axel largely moved out to stay at a care home two months ago, at 10 years of age. He stays here, home, two days a week. 

This is my first holiday with him away so much. Despite the fact that our two days were beautiful they were unsustainable. By the time I dropped him back I was physically aching and had had four hours sleep. (Partly my fault for trying to get him to sleep in a bed not the lounge. What was I thinking? I'd bought him a new bed, thought just may be).

With his sister home and not him, I feel his absence sharply. Axel not being here is not like a boy missing it is like an entire football club has left the building. His volume of noise and energy are incredible and my state of alert constantly high. Apparently the levels of hormones relating to stress are the same for parents like me and combat soldiers. 

I know I can not have him home more at this time. 

It doesn't hurt any less.

He's coming home later and my heart is happy about that.

LISTEN TO HEAR, RATHER THAN LISTEN TO RESPOND - 04 04 13

I feel a bit stupid.

I feel like I've only just really woken up to what I've been doing and want to seriously change it.

For ten years I've been (desperately) trying to teach Axel, change Axel, corral Axel to be more like me, us etc etc to be happy, to be safe etc etc and in doing so have not really stopped to know him. Really stopped to know him.

I get that Axel is super different and I've spent so much of my time trying to shoe horn him into a more me type of thing and I feel a bit of a klutz for not accepting him more and getting to know him. Appreciating him. Enabling him to be a him.

There. Dick. I've done it a lot but not nearly enough.

Perhaps this applies to all people for me. I'm so consumed with my meness I'm not really listening to their themness.

Damn.

Please say, you too. 

Eugh.

~ PUBLIC DISPLAY OF AUTISM ~ 04 04 13

If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order. If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she see’s it everyday. If dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke. If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how. He may be to big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today. If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple. Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand. No, it’s not bad parenting. Discipline won’t help.
This is autism, it’s his life. Don’t judge him, he’s not judging you.

~ By Tina Moreland

JUST CALL ME ATLAS - 03 04 13

So I let Axel sleep in the lounge and yet 2.30 am again, here we go. 

In between trips to check his temperature, soothe him, offer him water, drugs etc he kept shouting incase I should accidentally fall asleep. After the first round of disturbance Anusha helped by decamping to my bed, hogged the duvet, pinning me to a small strip on the edge and took up breathing heavily in my face.

I offered Axel Calpol but he was laughing too hard and pushed it away all over me. What is that stuff made of? You could assemble space rockets with it.

WHO SAID AUTISM ISN'T A GIFT? Wash your mouth out. You're being negative, need to re-frame. How would I get frown marks like these as deep as the Grand Canyon if it weren't for my beautiful boy. I wouldn't have written this on Facebook if I was wasting my time sleeping.

I think I'm delirious.

I shouldn't drive heavy machinery today... like my body.

After only two days of Axel's Action Man boot-camp I am sad to say I'm grateful he's going into the care home today. I have a sprained ankle and a plaster for a sense of humour with no sleep. Even this, the 12 millionth viewing of Jungle Book isn't lifting my mood. But Axel's jumping up and down with joy. At least one of us...

The care home taunts me, telling me that he sleeps til 7 and then potters in his room til about 8.30!!!!

But then I try to see things through his eyes... who wouldn't want to get up super early to see this vision of beauty with it's increasingly interesting map of wrinkles? Eh? Just call me Atlas, holding up the World. No sweat.

Z zzzZ zzzzzZzz ZZzzzzzzz zzzz z

EARLY DAYS - 21 03 13

In August 2005, when Axel was 3, I steeled myself, armed with information to prove to the assessors at the Seaside View Hospital that our son had Autism. I wanted to win a diagnosis of Autism for my son so that I could apply for a statement of Special Educational Needs and access the vital therapy he needed. I avidly offered my evidence. Questions asked, notes taken and we were asked to leave, to go outside for a while. We stood outside in a children's playground barely breathing. We returned to the room and I spied that on the back of her sheet Axel had ticked three boxes out of three and I offered, 'Oh Axel’s done really well' and she replied, 'Oh he's done really well and turned the sheet over to show me that he'd ticked 11 out of the 12 boxes to assess for Autism. The first of many top marks in severity. I wanted to succeed but only just. Enough to get help.

As we left that day in summer, I vividly saw in my mind’s eye, a sepia-toned photograph. In it were an aged husband and I at the top with our two children Anusha and Axel sat with their respective husband and wife below. Below them were their children. The image was shockingly clear. I was surprised at its formality. I was saddened by it's poverty. In my imagination I had space for either of them to be gay. In my imagination I had space for a third child but none of that was there, just a traditional family scene. As we walked away from the hospital that summers day, Axel's wife and children were torn away. I was startled by the image. In my head, Axel would be no more than a quirky, adorable soul who would still achieve all I hoped life would afford him. With love, work and skills we would help him to be so.

Clearly my soul knew differently. Even so my soul did not sense how an irreparable tear would appear between my husband and I. No therapeutic tape could repair it. I want profound support to be immediately offered with a diagnosis. We were left to go home with a list and work out what to do next. Fellow mothers were my source of knowledge and support but what if you're not extrovert like me? We also have Amaze, an exceptional charity that supports parents like me. But what to do with the grief? The differences in the way my husband and I responded drove a silent angry chasm between us.

What would you have liked to support you? What do you want for people?

MIND ON SPIN CYCLE - 21 03 13

My mind is like a faulty washing machine that keeps thundering into a useless spin-cycle. Today, the Heads of Services make their final visit to investigate my claims and then we'll have another meeting to discuss plans for Axel. 

This is the illustration I drew to clarify the issues. On the right is Priors Court School. Everything on-site of 50 acres. A specialist school for pupils with ASC. Over two hours drive away. On the left, on my doorstep, is the solution he's currently in. Given that transitions are a huge problem for him the inherent fault is obvious but also the specialists are incomparable and the size of staff unwieldy. What I didn't account for is how happy Axel is to come home. What to do?

Spin, spin, spin.

Gratefully I'm off to AMAZE's course (brilliant local charity supporting parents like me) called 'Looking After You' ran by the lovely Sandra Chitty. A couple of hours of talking through issues, pilates and meditation.

Wonder if I'll weep again. Ho hum.

And I am grateful to his school and care home for they give their best to a very tricky little chap.

JUST GOES TO SHOW IT'S WORTH ASKING... - 14 03 13

The last visit to the doctors involved a 40 minute wait. I was wrestling with Axel on the floor trying to amuse him to stay inside. A fellow patient, who'd been seen, came out and saw us still there and offered to stay and call us in when his name was called. We stood outside in the pouring rain, Axel calmly standing in a drain, his feet getting drenched. A sick child in a drain. 

The doctor wanted to take a blood sample but was clearly very anxious of a boy careering round his room. I reassured him Axel would be fine and true to form Axel sat calmly watching the syringe fill. Afterwards I commented that Axel was shaking. The doctor said, 'He's not the only one'.

I rang the doctors to offer giving a talk to the practice about Axel and Autism, our needs and asked that children like Axel be flagged so that when they arrive they are the next one in... like at Disney World, Lego Land etc. He can not wait. 

She welcomed my talk and will book me in for the next month's meeting session at the practice and said she would action my request so that Axel will not wait again... and children like him.

Hooray.

MARY'S STORY - 22 02 13

A mouse looked through the crack in the wall to see the farmer and his wife open a package. “What food might this contain?” the mouse wondered. He was devastated to discover it was a mousetrap.

Retreating to the farmyard, the mouse proclaimed the warning: “There is a mousetrap in the house! There is a mousetrap in the house!”

The chicken clucked and scratched, raised her head and said “Mr. Mouse, I can tell this is a grave concern to you, but it is of no consequence to me. I cannot be bothered by it.”

The mouse turned to the pig and told him “There is a mousetrap in the house! There is a mousetrap in the house!” The pig sympathized, but said “I am so very sorry, Mr. Mouse, but there is nothing I can do about it but pray. Be assured you are in my prayers.”

The mouse turned to the cow and said “There is a mousetrap in the house! There is a mousetrap in the house!” The cow said “Wow, Mr. Mouse. I’m sorry for you, but it’s no skin off my nose.”

So, the mouse returned to the house, head down and dejected, to face the farmer’s mousetrap alone.

That very night a sound was heard throughout the house – like the sound of a mousetrap catching its prey. The farmer’s wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught. The snake bit the farmer’s wife. The farmer rushed her to the hospital and she returned home with a fever.

Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup’s main ingredient. But his wife’s sickness continued, so friends and neighbors came to sit with her around the clock. To feed them, the farmer butchered the pig. The farmer’s wife did not get well; she died. So many! people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.

The mouse looked upon it all from his crack in the wall with great sadness. So, the next time you hear someone is facing a problem and think it doesn’t concern you, remember: when one of us is threatened, we are all at risk. We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another. Each of us is a vital thread in another person’s tapestry.

LOCKED UP - 17 02 13

With Axel not here, I did sleep well... and it is so nice not to lock, not just the outer doors and windows but the internal doors too... I don't like being so locked up. In case of fire or emergency I'd be trying to remember where I'd last hidden the keys. The times a phone's been ringing in a locked cupboard and I am laughing as I have no idea where I last hid the key. (Axel will target phones if he's not getting his way). I can't keep the keys on me as there are others who need them and I end up endlessly wrestling Axel, which he loves, as he tries to pry them off me. He watches like a hawk for where I hide them. Perhaps there's a solution I've not thought of... and for today... I can think of something else.

PARDON??? - 15 02 13

People ask me about Axel's ear-defenders. They are not head phones but ear-defenders from the builders' merchants. Axel is very sensitive to sound and after walking around for a week with his fingers in his ears we bought him a pair. He is relieved. You can get posher designs, more effective and subtle but Axel uses them to express his anger by smashing them into the wall so we've opted for the cheaper design. The merchants kindly bulk order and sell them to us for less. 

I am quite grateful to the defenders for the way they sign-post 'different' to the public. I sense they invite the public to think again about what they are seeing. Axel looks so fine, the ear-defenders say judge the behaviour, us, again. 

He wears them all the time. In the bath, the pool, to sleep.

Imagine the world was screaming at you all the time.

THE COUGH IS SPOILING MY GREEN - 09 02 13

I was told of a bright verbal child with severe Autism who became very distressed in class and cried out, 'the cough is spoiling my green'. The child was taken to a quiet room to calm. He explained very clearly that he knows we call the days of the week Monday to Sunday but that he sees the days of the week in colours. He moves through colours. His favourite colour is green. Wednesday is green. He wants nothing to spoil the green. Screaming and coughing are the two worst things in his world. The Teaching Assistant was coughing. It was Wednesday.

My child is non-verbal and even though knowing someone is about more than speech I know very little, nothing, about what my son thinks after 10 years of loving him. Why does Axel do what he does, what motivates him, what does he fear and why? I have no idea of his sense of future or whether he imagines it and if so how? I can know what he eats today and that he 'likes' being chased, tickled and massaged, where he chooses to sleep, that he climbs, that he bites himself. Beyond these things, I can only imagine why he does what he does and I know nothing of what he thinks about. I am limited by my Neurotypical imagination. By being me.

If Axel points to a picture of the shops, is it because he wants apple juice or to get out of the house, because he fancies a run or because he likes to sit at the back of Sainsburys. Does he like the back of Sainsburys because he likes the lighting, the hum of the refrigerators or the smell of the bakery? Or something I can not even begin to imagine. The staff are very helpful and will bring me a kick stool to sit on whilst I wait with him. Why is a bath ok one day and then terribly not another? How well do we ever know each other really but this is so very extreme. Without this knowing, it is so hard to help or know what fun might be. I know he likes something about glass elevators and he did enjoy the Brighton Wheel for his birthday treat but I can sense my ability to glimpse into his world is so very slight. 

Axel is very bright. He would never not play the tv in his bedroom because it is bed time so I would lug it out to the landing where there's no plug socket. I found him out on the landing, changing the volume with his toes having plugged it in with an extension flex from the under-stairs cupboard. I have never showed him such a thing or where it was stored. 

I imagine his world is fascinating and, I fear, frightening. I wish I was better able to tune in to his world. To be with him.


For those of you who have or care for completely non-verbal children... What do you experience?

I AM FIGHTING TO SEND MY SON AWAY - 08 02 13

I am fighting to send my son away to a Residential School that can help him. I've been forcing myself all week to prepare for the next big meeting only to have it postponed today. The mental steel I have to find in my soul to do this is sweltering. I am learning to surf on sewage. I see my son two nights a week for now... he is distressed, at school he points to my picture. Whilst folding his laundry, the little voice inside my head says...

Axel is leaving.
I want him.
I can't have him.
It's not safe.
This is for the best.
I miss family.
It'll be alright somehow.
I don't know how.
That's what frightens me.
But then we never do?
To trust we'll find a good way.
It's ok to cry.
I miss him.
And I always have.

Look away if you don't like strong language... - 02 02 13

I need to speak...

I could howl, growl, sob.

Letter today from Brighton and Hove Council confirming shit. Offer of business as usual for Axel with his ASC, ADHD, SLD, Eczema and Asthma. As if this scenario hasn't failed him enough... ooooh let's keep him there. I am furious. Furious with his school for saying they can meet his needs. Are they so ignorant they don't know they aren't, can't. Not because they don't wish to but because he is so severe. I have met severe ASC professionals but not in this county. They are not enabled, set up to meet his needs. This is all about money not the child. He needs to go away. Do you know how painful that is?

It's one thing to cope with the branding pain of him needing to leave my home at 10 years of age without being dragged over the hot coals of his severity. To argue over months and tens of thousands of pounds to get him to a place that can actually meet his needs. What a criminal system. 

The poor are fucked. Thankfully I am wealthy enough to attempt to be fucked through the eye of their needle and get him where he needs to be. We should be helped not crushed. 

I am angry. I want better for these kids and their families. 

I get the money thing.... what's it worth... our kids futures???? And we all know that early intervention equals cheaper outcome. Please.

I know a number of mothers going through this. Please. 

Please like, comment share this... I want people to know. I hope it makes enough sense. I am beside myself.

HOPE IS A DIFFICULT FRIEND - 18 01 13

Generally people are very keen for me to be happy that Axel has largely left and is leaving. It's good for him, for me, for Anusha. About time.

For me, all emotions are to be valued, heard and supported. My happiness is easier for people, my grief, difficult for most people. I find it hard enough to honour my grief without constantly being herded away from it. 

I am finding it hard to be out in public with the "How are you?" question. "Fine thank you, grieving the loss of my child". Axel leaving for care aged 10 is a huge step, a huge nail, a closing door on hope. My hope for even a non-verbal cohabiting. I am willing to serve him but he and we are no longer safe so he is leaving.

I yearn for him. The child that is. My pleasure is in seeing him eat well, cream his bitten hands, tickle him, see him sleeping soundly. I no longer get to care for his body.

I yearn for him. The him that has not come yet, will not come. I need to let him be. The boy who talks, wants friends, children, me. Let him be, he is not here, he never came. 

What I get in this is that Hope is a difficult friend to have.

THE ROSE TINTED GLASSES COME OFF - 09 01 13

I've been struggling for a couple of days...

I wear rose-tinted glasses for most of the year. Welded on. Necessary accoutrements to stay sane I find. Ah another broken souvenir hurled into the wall... one less thing to dust! Then there are days or occasions when they come off, need to come off, to calculate wise decisions. With the kids back to school and another big meeting tomorrow they are off and I dare to feel my exhaustion and sense of defeat. I survey the landscape of breakages and bruises. The diary full of unhappiness, anxiety and lunacy. Driving about in the car for no reason other than it's a relatively safe thing to do. Axel will not swim now, will run away in the park. The new videos were thrown into the wall raining plastic. 6 in one day. I can only shop because Axel can still squeeze into the trolley. I speed shop whilst feeding him favourites. Axel is not happy enough in our home. There's only so much tickling games I can do. We need more help.

I am still waiting for a response to my letter of recommendation for Residential School. They may meet tomorrow. Whatever happens I know I can not keep Axel safe let alone happy for ... anytime longer? I can not go out with him on my own and be sure. Two of us struggled to manage him the other day... he bit me again.

I feel a lot of pain when I think of Axel. As he leaves home another dream dies. So many dead dreams. Not being able to talk together at all the biggest. I do so hope they say yes and that he will be happy there. That they can meet his needs. I hear all the reasonable arguments and I know what I have done. And there is a primordial part of me that bellows with the animals.

I do not expect you to 'like' this but if you do hit 'like' I'll take it to mean you hear me.

Axel's in the care home tonight. Anusha's on her way home. I do wish I could cheer up a bit for her. I will.

AXEL IS 10 - 30 12 12

Axel is 10 today!! 

For his birthday he will have parmesan cheese and dark chocolate (that will be left in small piles for him to scoff when he cruises by). He will be chased a lot, he will be tickled a lot and kissed (but that's about me). He can have a small bowl of flour and milk. A bubbly bath...he loves bubbles and will eat a bath full and burp for an hour afterwards. I will let him at the Xmas cake for five minutes to eat all the marzipan he can. A video of the Hungry Caterpillar is on it's way which will bring much joy. For his love of heights and glass lifts we are going on the Brighton Wheel. Axel is a wonderful boy and I love him dearly.

THE GRANDFATHER AND THE BOY - 29 12 12

My father is a big man. Not just his height at 6 foot 1 but his aura is big... if that makes sense. Many Christmases ago I remember seeing him lying on the ground in my lounge trying to interest Axel in opening his present. An unusual sight. My father was pleased with the wooden bus he'd found for his Grandson but the boy walked off. Axel was nearly two and undiagnosed. I comforted my confused and disappointed father, helped him up and excused Axel... 'he doesn't understand presents yet'? 

My father is confused by Axel. He tries to know the boy but to no avail. Years later, Axel approached my father sitting at our table and pulled him by the hand. My father was delighted and surprised as were we all. Axel clearly directed my father with him, pulled him through the house. 'Where are we going?' my father said, clearly chuffed. Axel put my fathers hand to the front door handle. 'Ah, he wants to go out. Is that ok?' My father looked at me for approval. The door opened, Axel pushed my father out and shut the door on him. My heart ached. I felt the pain through the door.

Years later still, as always, out of nowhere, Axel sat on my father's lap. And sat. Axel let my father put his arms around him and gently cuddle. He rested his head on my father's chest. The pleasure blushed through my father's face, his body, pleasure could be felt on the moon.

Axel's blessing is such a blessing.

LOVE AUTISM VS HATE AUTISM - 28 12 12

Something's still troubling me...

In the same week, two posts, one celebrating some people with Autism in all their beauty, not a bad word said. The other outing the bitterly harsh realities of some people with Autism and what they feel it has robbed their loved-ones of and their families. The comments often state a hatred of Autism. They are at odds. They inspire each other.

If the Autism impacts in a way that, 'the good outweighs the bad', fantastic. I am jealous. 'Perhaps he'll be the next Einstein'. I am very pleased for them. In our case, at this time, the bad outweighs the good and he and we need a lot of help to support Axel to have a good life... to even stay safe! I find it hard when I read, 'Autism is a gift'.

I neither love nor hate Autism. It is something that has come into my life and I am managing the best I can and I am finding it very hard. Actually I'm bullshitting. To be clear, I do not love or hate Autism BUT I hate AXEL'S Autism... there you are. His is so damagingly pervasive it means I can't get to live with him. I hate it. And there is perhaps a key to unlocking this stand-off... we need to take each case individually and the families too. Every one is SO different it is ridiculous to generalise that Autism means this or that. Support the individuals please. (Thank you Angela Pell for that wisdom).

Axel's Autism means that life is very hard for him and in turn very hard for us. Axel wanted Anusha to chase him more yesterday and I'd asked her not to as he was getting over-stimulated so he severely pulls her by the hair up the stairs. No malice, just his way of communicating. Anusha in tears again. When I intervened he deeply bit my arm again, fourth bite this week. The list of difficulties is inexhaustible, my stamina isn't. The physical damage to our flesh and the house is unacceptable. My carers are leaving for biting and danger.

I could ask for more help from society. I question my patience, attention to detail, my having tried enough. And then I breathe out and think I know that Axel, at this time, needs a dedicated team to meet his needs... a team of expert athletes. I can not support him adequately. I am not enough... what kind of gift is this to him or us?

What I get is that the 'Love Autism' group hate the defamation of the 'Hate Autism' group as it impacts on their schooling, bullying, attitudes of society, prejudice in the workplace, feelings about themselves/their loved-ones. We must be positive about Autism. And we really must.

The 'Hate Autism' group are infuriated by the 'Love Autism' group as it denies them their feelings. If Autism was all about gorgeous, quirky but delightfully talented folk that we get and society needs to wake up to why is this group feeling so desperate, frightened, inadequate and in need of profound support. The harsh realities of this group must also be known so that support, funding, appropriate schools are built, appropriate emotional support is devised.

I think both groups love Autists, the people, and need very different kinds of support. Our fear is that the others truth will adversely impact on our support. My wish is that we respect each other and find a way to relate not compete, comprehend and not beat. To appeal for the support we need alongside each other.

It's hard enough.



The two posts:

http://www.facebook.com/AutismShines


http://autism-daddy.blogspot.com/2012/01/to-parents-that-say-i-wouldnt-change-my.html

FEELING TROUBLED - 19 12 12

Home from another training feeling tender to encounter the disturbing news from America of the deaths of children, teachers, a mother and a young man.

For years now, when Axel bites me to the point of bruising and blood I repeat Marshall Rosenburg's words along the lines of... all acts of violence are the tragic expression of an unmet need... I do not see the behaviour as about me but an expression of the deep pain and frustration Axel is in... and I try to meet his need. It troubles me to try and imagine what kind of hell that young man must have been in that his behaviour was his best idea. Consumed by the agony of years?... thankfully I can not imagine. The results, appalling. 

I have been sent a number of articles in the wake of this. Of parents living with and loving children who live with fears, pain and violence unimaginable to me. My heart aches for them at a time when I accept that I will not keep Axel safe myself for much longer despite my efforts and my desires.

My thoughts are with children and people who live with gross pain, violence and fear, the parents and carers who stand by them. I wish for a much better care system to provide appropriate support for all involved.