Respect over Charity

I think a lot about the balance of power in relationships.  As a mum of three children on the spectrum, I have got many things wrong over the years – if I could start again from day one with the knowledge and experience I have now I’d do a whole lot differently, believe me!  But there was one thing that I got right from the word go, and that was to give my children my total respect.

I’ve never pitied them.  Of course, I show them sympathy if they’re hurt or upset, but I’ve never felt sorry for who they innately are.  I feel that they are whole, in no need of fixing or improving.  I teach and learn from my children in equal measure, and to me, this is the core of respect.

In the past, charity and pity have been inseperably intertwined.  The donor is imbued with a sense of superiority, grandeur and righteousness.  The receiver, head bowed and humble, knows their place.  Pity can only ever divide us from the people that we pity, whereas empathy connects us.  Pity feeds our ego, but empathy frees us of all egoic reaction.  I see this as a subtle but fundamental shift in our attitude to disability.

The young people that we met at an equality and diversity conference last week were asked to volunteer information about their life goals.  Their responses ranged from an ambition to cook their own meals to being a research scientist for NASA.  All of these ideas were greeted with whoops of encouragement from the other young people, and helpful suggestions as to how to move towards the goal.  To witness young people with disabilities supporting one another in this way was humbling for me and prompted me to think more deeply about charity vs practical, respectful support.

When we respect someone, we tend to be quieter, we listen more, we are eager to learn.  We ask questions and listen attentively to the answers.  When we pity, or do not particularly respect, we are lecturing, we interrupt, we dictate.  We make decisions on other people’s behalf.  In our society the most severe punishment, reserved for our most heinous criminals, is to take away their liberty and their right to choose.  Looking at it that way, its shocking to realise that this is the way that people with disabilities have been treated for centuries in our society.

However, we can only move forwards and learn from the lessons of the past.  Real change is afoot in our society.  With empathy and a willingness to learn we can all grow and benefit from the subtle shift away from charity towards real respect.IMG_7418

Helping Hands

I’m not sure how I would manage my family without the help of respite services.  I daresay I would be begging for certain members of the household to be institutionalised, with myself at the top of that list!

In all seriousness –  respite care is a service who’s value must go completely under the radar of someone who doesn’t need to access it.

My children are a constant source of joy to me, and  in  times of reflection I remind myself to be unconditionally thankful for all that they have brought to my life.  They have completely reordered my understanding of what is of value in this slice of reality that we can Life.  I no longer become attached to the material things that many people strive manically to possess, which frees me up from a whole lot of striving.  I have rediscovered my childhood appreciation of nature, being privileged to witness the natural world from Daisy and Lenny’s vantage points.  Intellectual  prowess has slumped right down my chart of what to value in another human being.  I see intellectuals as tortured souls, their busy, dictatorial brains disallowing any kind of peaceful harmony.  I’ve been taught to value the simplest gestures of affection, a light touch to my face, an intent gaze into my eyes.  This  responsibility of caring for vulnerable young people has re-educated me, I feel much more of what it means to be human, humane.  And all thanks to my lovely little cherubs!

That said, they are a tornado of destruction,  and I am required to constantly put the house back together to avoid our home sinking into an unacceptable and unworkable level of disarray.  Escapology is high on Lenny’s agenda, and he constantly keeps one eye on exit routes, awaiting his chance to slip out to that free bar of confectionery otherwise known as The Co Op. Puberty and the hormones that it heralds mean that my innocent little darlings cannot be left unsupervised in a room together (yes, this is innocence, at its purest).  Despite my new understanding of peace, nature and harmony, I am on constant alert until Daisy and Lenny are safely ensconced in their respective bedrooms, and even then, have to keep the telly or the music down low in order to listen out for thuds and bumps or sudden cries.

As the children have grown bigger, more apt to destroy things, more able to escape, offers of help have understandably dwindled.  The effects of this are manyfold.  Less  variety of experience for Daisy and Lenny, complete pressure on us, as parents, to provide all that should be provided.  I’m very lucky in  that I have a wonderful husband, Daisy and Lenny have a Dad who loves the outdoors as much as they do, and is happy to spend many hours exploring parks and building rope swings in the woods.  I have a good inkling as to how hard it must be for single mums in my position, and I don’t like to think about it very often.

So, my Knight in  Shining Armour, respite services.  What a difference my children’s respite places have made to our lives.  Freeing us up to do ‘normal’ things every now and then.  To go out to a show, or for a meal.  To take a short holiday where the pressure is completely off (though I must admit when we did this last September it took me three days to relax into it, my nervous system being hardwired for constant alert).  And for Daisy and Lenny respite gives them the opportunity to grow up.  Even though their intellectual ‘ages’ are much earlier than their chronological years, this doesn’t mean that they will be babies for every.  They are growing up.  They desire independence, even though this can never be absolute.  On  Sunday Lenny went to the seaside with his gang at respite, when we picked him up at 3pm he still had his trousers rolled up from the paddling and sand between his toes.  He was as happy as a boy could be, and this makes me very grateful.  How differently I would feel about the service if we had to drop them off kicking and screaming and begging to be allowed to stay at home.  But no, for both Daisy and Lenny, their time in respite is spent being engaged, stimulated, hanging out with friends and being given the 2opportunity to engage in the community without being on the end of mother’s proverbial apron strings.

For all of these reasons, and many more, I’m going to speak about the value of respite services at this year’s NHS Expo conference.  I’m very much hoping that the people with the power to invest in the service will be listening.

Changing the World

Our world is not a fixed place.  The very earth itself changes slowly but constantly. I see the shape of the mountains and hillsides, and the stream of humanity rushing along so much like a shoal of fish, living organisms that are so beautiful but so temporary.

The rules of society are not fixed.  Our society is not a brick wall, not a nameless establishment, but a set of muteable rules and customs formed by a common belief.  Often, a belief or a rule goes unchallenged for many many decades because of our supposition of its solidity.  As soon as we question, as soon as we gently push the stones of these stone walls that are our society, we find out just how flexible and adaptable our society can be.

Its a little bit like going through life believing you are a mere mortal, and then waking up to the fact that you have been a superhero all along.  Try it.  Challenge and make changes today.  What’s the worst that can happen?IMG_9031

Echoes of Shame

In past times, people with severe disabilities have been feared, excluded from communities, their families ridiculed and ostracised.  The echoes of this somewhat ruthless treatment are still with us today.  Even in recent times, disability was hushed up, not spoken of in polite circles.

I love the way that small children react to Daisy and Lenny.  Lacking inhibition, and with a newfound wonder of the world that has yet to be dampened by negative experience, they look, they ask, they want to reach out.

‘Is she just a baby?’ a little girl, barely more than a toddler herself, once asked of ten year old Daisy, who was, at the time happily dropping handfuls of pebbles into her own hair.  From an older child, or with spiteful inflection, the ‘just a baby’ comment would have been hurtful or insulting.  But watching Daisy engaged in her chosen activity with childlike delight, no concern for the dirt on her clothes or in her hair, no concern for anything except the pleasure of the sun-drenched moment, I could see what the little girl meant.

I smiled warmly and was about to explain that Daisy wasn’t a baby, but that she still enjoyed many of the things that babies do.  But the girl’s Mother dragged her off roughly by the arm, mortified it seemed that she should have openly asked about Daisy’s condition.  These are the echoes of generations of shame and secrecy that can only be eradicated by shining a light of129 truth and openness on the situation.

Many families I know (myself included from time to time) refuse help because of a fear of not being seen to cope .  A desire to do everything independently and not to have to rely on the charitable actions of others.  This resistance, again, is inherited from our less fortunate forefathers.  People who could not contribute in the normal way were a burden,  they would have to be sent away, or left alone, in order that families did not fall into poverty.  Imagine the grief of a mother forced to do such a thing, and the shame that she would feel on top of that grief, and the need to cover up both the grief and the shame in order to plow on with her life.

Back to the here and now, attitudes and services sometimes fail us, and the echoes of past troubles haunt us.  But things are looking up.  When we speak with honesty, wanting not pity but fairness and understanding, we find that people are prepared to listen, and to act.  When we strip away the outmoded echoes of shame, then we are free of those old and tiresome burdens, and  we find ourselves lighter, and much more able to deal practically with the problems that present.  We find ourselves free to enjoy the beautiful children that can teach us so much about what it means to be human.

Less Words – More Meaning

With two of my children being completely unable to use language in a meaningful way, and the third being able to outfox me in any argument because of her highly developed skills in language and her spookily accurate memory, I spend a lot of time considering the complexities of language.

Sometimes it seems to me that language has evolved further than the limits of its original intention.   A little bit like the service robots of science fiction, invented to serve us and be useful in a simple day to day way, but then going on to surpass our intelligence and dominate the world.

Words were invented by our pre-verbal ancestors as a means of warning, labeling and recording.  Then they went on to express feeling and emotion, to express wonder about the future and to reminisce about the past.  Now as I observe the use of language in typical people, it seems that we can almost switch off our emotions, and let the scripts take care of business.  Like two armies fighting a battle while the generals enjoy a whiskey in the mess hall, we often seem detatched from our conversations, sticking to our lines without the inconvenience of truly connecting with the person that we are speaking with.

Without language at her disposal, my middle daughter Daisy has only her friendly intent, her pure love, the shining soul that is seen so easily through the windows of her beautiful eyes.  These are her tools for netting friends.  It has to be said that she uses them to great effect.  Once she has targeted her intended friend, shone the light of that love on them, touched their face and bestowed a smile like the sun coming out from behind the clouds, people tend to remember her forever.   I often bump into people who have met her only once or twice, but are clearly delighted to know her, tell me that they think of her often.  She pops up in people’s dreams all of the time (speaking, strangely enough) and I’m always happy when people share these dreams with me.

If we use our words frivolously, always secure in the knowledge that there are thousands more at our disposal once we’ve thrown a handful in this direction, or a handful in that direction, do the words lose their meaning?

I decided upon a small experiment where I would drastically reduce my language, and increase the value of my interactions.  In every conversation, I would only ask a question if I was interested in the response, and had time to listen to and act on the answer.  I would say the things that I really meant, rather than what was expected of me.  Applying ‘mindfulness’ techniques to all of my human interactions.

I use very reduced language at home with the children anyway, so this came quite easily to me, once I had decided to give it a go.

The results were startling.  Three conversations ended in a physical embrace.  Someone I hardly knew at all told me that it was so good to talk to me, and could we meet for coffee or something soon.  This was all in the space of an hour or so.  Perhaps it would be too exhausting to put so much effort into interactions all of the time.  Or maybe the slicing away of hundreds of words from our daily lives would even things out.

At the moment I’m sold on being more like Daisy, more feeling, less words.  So on that note, I’ll sign off. 🙂

The Posters and the Bullies

Although it all got off to a good start, two things ruined the whole experience of secondary school for me.

One was a poster campaign for bullying awareness, and the other was the bullies themselves.

I understand why they did the poster campaign, but I cannot understand why they ever thought that having a poster which was a silhouette of a child that had hung themselves because of bullying, would make school a better place to be.  I literally could not stand to look at that picture.  I saw it once and only once, and for the rest of the time I had to walk with my head facing downwards, in case I saw it again.  People with autism react much more strongly to images than typical people, but really I can’t imagine that anyone would see that poster and feel happy.  Ok, so its supposed to make you think, and its supposed to be shocking, but it upset me so completely that I would cry every time I thought of it.  The poster seemed to say to me, if you are bullied, then this is your destiny, and I even thought about taking my life because of it (it was only a thought, never a plan, as I explained to my therapist afterwards).

And then, because I would cry often in school, and because I developed a habit of walking around and looking at my shoes to avoid looking at the posters, and because I felt like I couldn’t join in anything anymore in case I came across one of the posters by accident, a number of boys began to bully me.  I didn’t tell anyone about it for a long time, people told me that if you ignored them, they would stop.  I ignored them, but they thought it was funny that I ignored them, and they thought that that meant they could get away with it.  In the end I tolerated it for four years,  they would make fun of me, sometimes say things about my brother and sister, and sometimes threaten to hurt me.  My best friend’s Dad caught them at it one day, on the way home from school. He is big and he chased them and told them to ‘eff off’.  That was so funny, because its not often that adults say stuff like that and they were quite shocked and scared I think.  It just goes to show, at the heart of it, bullies are just cowards after all.

With the posters, Mum went into school and tried to explain how much they were affecting me.  The staff in charge of the anti bullying campaign said that it was a shame that I was so affected by the posters, but that they would have to stay up because it was essential to get the right message across to kids.  What is that message?  It shows a powerful message to the bullies, like, this could be the result of your horrible actions, but to the people who are being bullied, what does it say?  Prepare to die…?

But anyway, my tactic then went on to be ‘never cry in public’.  At CAMHS they have told me now that this is not right either, bottling things up.  People cry all the time, adults, kids, everyone.  Its ok to have a little cry, but when I was 11 made a connection between crying in school and being bullied and I was determined never to cry again.  I have learned the hard way that sometimes you have to let a bit of your feelings out, or they go bad inside you like something rotting.  You learn lots of things, as you go on.

College is much better, though.  Bullying isn’t accepted, or swept under the carpet.  Individuals are everywhere, not even bothering to try to fit in, being themselves, and that is very good.  Things are looking up!

Sensory World

It often seems to me that my children live through their senses, in the present moment, exactly as nature intended us to live before we as a race and as individuals were hijacked by the manipulative shadow of our egos.

People with autism have got so much right, and us neurotypicals could learn a lot from them.  Daisy and Lenny (and Rosie too, to a large extent) place no value on things that they cannot eat, sprinkle, or roll around in.  Piles of toys, to them, are litter, things to be climbed over, crushed underfoot and discarded.  Christmas and birthdays used to make me feel quite uncomfortable,  before I adjusted my expectations to suit my children’s wants and needs.  Every aspect of our society tells us that a good mother provides things for her children.  She makes small sacrifices throughout the year in order to put money by, to scrimp and save in order to unveil with a flourish on the big day – a new bike, the latest games console, up to date mobile phone or music system.  My kids do not want these things at all. Music is a favourite in our  household, but for its own sake, not because of any pride in the gadget that delivers it.  And the best music of all?  When we are all singing along, playing ‘hokey cokey’ or dancing on the living room.  Priceless things which have no price.  For all their inability to learn new things, my children instinctively know that it is experiences, not things, which have true value.

Daisy and Lenny live inhabit a sensory world that I had rejected, or forgotten, before they came along.  Running their hands through dry sand, or uncooked rice is an activity that can engage them for hours on end.  Patterns engage Daisy.  She is fascinated by offcuts of material especially if they are decorated with glittery threads or sequins.  She spreads these scraps of material around her as she sits on the floor, turning to examine them from different angles, arranging and re-arranging her priceless treasures.

A windy day where leaves are chased around in whirlpools of frantic air delights my children.  Its an eye opener, really, sometimes I am left thinking, why aren’t we all out here, chasing the leaves?  Its easy to get sucked into the common negative notions that indoors is safe, warm, comfortable, but our indoor worlds seem so stale by comparison, when on the other side of the door the beauty of an ever changing sky, a moving painting with natural soundrack and smells and textures remains unchartered and unchecked.

For me,  Daisy and Lenny are a link to the inner child.  Before we are corrupted by capitalism, consumerism and the ego’s need to adorn ourselves with impressive trinkets, we all hold this fascination for the natural world, an innocent appreciation of our true environment.  I’m thankful to them for keeping this link open, so that whenever the adult world makes me feel weary, we can venture out into the elements, switch off our thinking minds and re-engage with the sensory world.