All posts by myperfectlyimperfectfamily

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

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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.

Friendships

My friendships are very important to me, but friendships havn’t always been that easy.

I have always talked very well, I learned to speak in sentences, not single words.  When I did my first animal noises, my dog noise wasn’t ‘woof!’ it was more like ‘ghhhnff!’ exactly the same way that I had heard a dog say it.  I have always been a very good copier, and can copy accents, languages, and other sounds very easily.  I can do good impressions of people, though I know that this is not always kind, so I usually don’t bother, unless its someone off the telly and they are never going to know so I’m not too bothered.  Also, they are going on the telly usually to get famous, so if someone is trying to do an impression of them then they are really achieving their goal that bit faster.

I’m a loyal friend and will stay faithful to my friends for many years, and never gossip about them.  Honestly, though, sometimes I forget to ring or text them.  Mum might say, shall we have (lets say Ben, but I don’t really have a friend called Ben, just as a hypotheses) Ben over for dinner?  And its a good idea, I really want to have Ben over,  but if Ben hadn’t phoned me, or Mum hadn’t suggested I just might not have thought.

I find it really difficult to enter a group.  Sometimes there are large groups of people who seem to be having fun and it would be so good to be part of it, but something makes me stop, or worry that they wouldn’t want me in the group anyway.  My Dad is always very reassuring, like who WOULD’T want you  to be part of their group, but then he is my Dad and has to say nice stuff to me so its hard to get a real picture.

There are a few people that I really trust, like my best mate Will, who also has Asperger’s.  We got to the cinema together once a week (he goes much more, he loves films, has an ‘unlimited’ card and has to see every film, even if he knows he is going to hate it.  He has to give the films ‘rock and roll’ symbols, 10 for excellent 0 for absolute rubbish.  There have been a few 10’s, but never a 0, I think).  I like going to the cinema with Will, it feels completely comfortable. Sometimes we fall out because he says quite sexist comments, but he is a teenage boy and he has to be forgiven.  Also, he is my best mate.

I think that there are many people out there who could be friends, but overcoming that anxiety to be myself and to let them into my world is a bit of a barrier.  I’m working on it.  In college today a whole group of people warming their bums on a radiator just swallowed me in, it was great.  One minute I was getting a bit of a warm, the next minute I was learning a whole group’s names (that felt VERY warm!) so it just goes to show, even if you feel nervous, you can sometimes be brave, and people will invite you in.

I’d love to have more friends, and I could develop of way of reminding myself to stay in touch with them, so that they know I still want to be their friends 🙂

Happy Families

In my dealings with families with a child in special education, or a child with access to respite resources, I meet many single mums.  A few single dads as well, it has to be said.  And I think that the statistics are something like 50% now, for a marriage to end in divorce.  But with added pressures, those statistics take a steep incline.  Marriage is hard enough when everything goes smoothly, but throw a severely disabled child into the mix, and any cracks in the marriage start to make a creaking sound.

So, in real terms, what makes these cracks so dangerous?   After all, a child is a child, and none of us really know what we are getting.  Well, those of you with families, do you remember the early years, when you were surviving on three blocks of two hour’s of sleep per night?  I feel sure that you have vivid memories of the horror of being dragged from slumber at 2 am,  an insistent wailing voice your rude alarm, knowing that, whatever happened over the next few hours, you would have to be up, active and doing important stuff at in only a few short hours.  And with a newborn, this can go on for anything up to six months, maybe even nine months with a poor sleeper.

So what if this broken sleep pattern persisted for 5 years, 10 years, 15 or thirty years?  It has to be said, we adjust, and we can get used to all sorts.  But at the same time a sleep deficit is being chalked up.  Good mental health and lots of sleep are intrinsically woven together.  Think how snappy you are with your hubby/wife if by chance you’ve had a disturbed night, then times this by 356, over ten years, or twenty, or thirty.

What if we disagree over what’s right for our child?  This happens in regular families all of the time, and the stakes aren’t usually that high – one parent might think its ok for Toby to quit cubs if he doesn’t really like it – the other might think he should persist – these little disagreements can cause subtle rifts in our relationships, but what if the implications are much larger – one parent might think that special education should be confined to history, that society should be an eclectic mix of all its constituents, the other might desperately need for their little one to have the kindest, most sheltered environment possible to enable them to reach their potential.  What if medical needs become a focus, and there is conflict.  What if one parent is fighting for treatment that they truly believe to be life enhancing (or life postponing) and the other disagrees entirely.

To be happy, functioning family members  we also need downtime.  ‘Wellbeing’ as it is fashionably labelled nowadays is huge on many major employer’s ticklist.  How are we to achieve downtime amid chaos, noise, broken nights and the uncertainty of behavioural moodswings.  Impossible, unless we are prepared to work together to allow one another complete breaks, but this, again, fragments the family status.

On the upside…coming through adversity, learning to cope as a couple through testing times adds great strength to a relationship.  Needless to say, I wouldn’t like to think of coping alone, without my fabulous hubby.  Having a partner who can tell at one glance that you absolutely need an hour with a glass of wine and a good book, someone who will not make a big deal about sacrificing their football training night, or ‘beer with the lads’ night in order to give you a bit of downtime, this will strengthen a marriage and reinforce the worn down mechanisms that have suffered the wear and tear of circumstance.

This is my way of saying, ‘thanks for being excellent, Kingy’ xxx

When We Were Young

I remember lots of things about when we were all little.

One of the very first things I remember is Lenny being born.  It was hard then, now I understand, because Daisy was sick a lot of the time, in and out of hospital with some very bad diseases.  Mum says there was always a hospital bag packed, and as soon as Daisy got past a certain level of sickness, it was go go go, to the hospital, Dad telling his boss that he had to take time off to look after me and Lenny, and Mum and Daisy gone for a few days, a week, or even more.

I remember Lenny being in a plastic baby cot that was for newborns, but he was about four months old.  He was massive when he was born, like a six month old or something.  But then, four months later, he was bigger than a man (exaggeration alert) and him being in that plastic cot, sitting up and sucking his two front fingers, this looked very funny.

I remember Daisy too, with her cheeks bright red, and a little vest with poppers it had yellow ducks on it.  I can remember thinking I hope that Daisy gets better soon so that we can all be together again, Mum and Daisy and Lenny can come home.

We used to all get a bath together, Daisy, Lenny and Me.  Lenny used to be in this inflatable yellow thingy so that he didnt slip under, and Mum was always in the bathroom blowing bubbles, saying ‘One for Rosie’ (she blew a bubble for me), ‘One for Daisy’ (she blew one for Dais) and one for Lenny!  We really appreciated those bubbles and laughed and laughed when we got our own.  It didnt seem like there was anything different about us all at the time, just like we were having quite a lot of fun, especially when Mum and Daisy were home from hospital.

Some of the things that Daisy had are here; double pneumonia, tonsilitis, laryngitis, meningitis, bronchiolitis (all lots of itis’s) but she is superstrong at the same time as being vulnerable.  She has learned to fight and fight, and the thing that is great about Dais is that she never feels sorry for herself.  I remember when she had had her tonsils out, she hadn’t eaten for a very long time, and we went to visit her in hospital.  Her face looked very small and she was quite sad.  We took her outside to the hospital grounds in a wheelchair that belonged to the ward, and there were millions and millions of dandelions.  Dad said that she shouldnt touch them because she was vulnerable for infections, but we let her come out of the wheelchair for a bit and she was just so HAPPY patting the daffodils.  Lots of other people I know might have been like ‘oh, I’ve had an operation, I havn’t been able to eat or drink for ages, I’m on a drip, isnt life awful’ but Daisy was just like ‘Dandelions!’.

Anyway, that’s the awesome thing about my sister.  If she’s happy, she’s happy, if she’s sad you really know about it because she has a cry like a cheesegrater against a blackboard (you know what I mean) and just the opposite, her laugh is a tinkling bell that brightens up the world.

When we were young it was as though every family should be like ours, and in a way I think that every family SHOULD be like ours, accepting everyone, not putting pressure on to be this way or that way, just loving each other.  Things changed as I got older and moved through school, I saw us all through other people’s eyes and sometimes felt like I was wrong, like we were wrong, like we were freaks or something.

The good news is that I have come through that now.  Its like when we were young again, only louder, messier, and even more fun!

Blame the Parents

It seems like quite a strange thing to me, but when you are a parent of a child or children with an additional need, the world and his wife feel that it is their duty to dictate to you exactly how the whole parenting thing should be done.  Who would have thought it?  Such a difficult job, with no two children being the same, and no two family circumstances being the same, but still, everyone knows exactly how it should be done!  And woe betide the parent of a disabled child if she should have the audacity to have faults!  Perhaps not to be too enthusiastic about cleaning the skirting boards or to enjoy the occasional night out.  Tut, tut, and she has a handicapped child!  You’d think she’d know better!

I remember my first Portage worker (Portage is a service in the UK whereby a member of their staff makes weekly visits with unusual toys to get the children going on the old development through play).  She was lovely, this lady, but had a rather worrying habit of gossiping about the other mothers.  One story sticks in my mind, a little girl with Downs Syndrome who was one of her regular clients.  The child was none verbal and often made a gruff sound in the back of her throat, in  lieu of language.  ‘We think it’s because she’s been left on her own with the dog’ my mentor mouthed, confidentially.  Now even as a novice mother of a disabled child, this worried me on a number of points.  1) Surely if there was any evidence that the child was left on her own with a nanny dog like something out of Peter Pan, then services would be intervening and not just gossiping, and 2) what was this lady saying about me, post visit?

This is just one of a number of examples that I have witnessed where it seems that professionals have not evolved from the basic need to find the culprit.  Why is this child disabled?  A drugs baby, perhaps, or the result of inbreeding?  A vicar’s wife who ran the local toddler’s group took exception to my breastfeeding eighteen month old Rosie whilst pregnant with Daisy.  When I first timidly ventured out into the world with my newborn, not quite having the words or the confidence to tell people that Daisy had some kind of a syndrome (at the time this vague diagnosis was all the information I was armed with) this lady crossed her arms, tutted and said ‘Well how many times did I tell you to stop breastfeeding Rose?’

I could go on all day with these examples.  I won’t though because readers would either become bored or outraged.

I don’t mind now.  For myself, I truly do not care.  I have developed the skin of a heavily armoured rhinoceros.  I implore professionals, though, and friends and relatives alike to please think carefully before dishing out advice, anecdotes and ‘I told you so’s’ to mothers and fathers who are emotionally raw, extremely sensitive and only just coming to terms with the fact that their child is different.

Choose Us!

With all of the extra things that you have to think about when dealing with a person on the autistic spectrum, you might be forgiven for thinking ‘Why bother?’ – and I guess you have a point.  On the minus side, people with autism can be a bit withdrawn, we can say stuff and people will look at one another like ‘Did she just really say that?’  We can go on and on and on about our obsessions (Hi, Will)  We can bring unwanted attention from people who might think,  ‘Why are you even hanging around with this person?’  When you are in high school, one of the last things you probably want is to hang around with the weird kids, right?  Heck, I’m not doing such a good job at recommending autistic friends, am I?  Well let’s have a stroll to the positive side and see what’s going down.

People with autism (and I for one hate stereotypes more than anyone but this one has a ring of truth) are honest.  Honest sometimes to the point of embarrassingly honest, but you get the truth from someone with autism.  If my Mum asks me how old she looks after doing loads of weird face exercises and rubbing half a bottle of face cream in, I say you look about 44, nearly 45, because she does.  I also tell her that she looks pretty, because 1, that takes the sting out of the age thing, and 2, because I think she does.  She is in no doubt as to how old she looks then, because I have told the truth.  Also, she gets a ‘pretty’ bonus.

I always tell the truth and hate keeping things from people.  It’s like a heavy weight on me if I have a secret.  Once its out, it isn’t so bad at all.  It’s very hard to find the fine line between keeping confidences and bearing that heavy weight of a secret.  As you get older though, you learn these differences.

Anyway, back to autistic people and their good qualities.

Lots of people in school behaved in ways that I didn’t really like.  Gossiping about each other, leaving certain people out of the group one week, and then the next week it was someone else’s turn to be unpopular.  Making little plans to get back at people, making people embarrassed in public.  I hate all of these types of behaviour, I don’t really understand them and again not to stereotype but I think not getting this behaviour is typical of lots of people with autism.  All of that social manipulation is another kind of dishonesty, and you don’t get it as much with people with autism.

Choose us!  We are great friends.  I know lots of people with autism, and it’s not like they all have the same personality or something.  My brother is the most memorable person in the world.  When we made ‘My Autism and Me’ for BBC Newsround we had hundreds of emails about him.  He was the star of the show but I got the EMMY (haha, Lens!) (but then again he wouldn’t have wanted the EMMY anyway, he wouldn’t have seen the significance.  Perhaps he might have liked to spin it round on the dining room floor, but he could do that with a pan, or a frisbee)  People saw him nesting on top of the tv, and having a great time in his den of bubbles in the bathroom and they loved him, even without him sharing any words, they just knew that he would be a great person to be around.  Yes, he’s not a great person to clear up after, but we all have our faults.

I’m thinking about all of my friends with autism now.  I’m not going to name them all because this is public and it might not be right, but you know who you are and I love you all. You’ve made my life better and richer.  I have friends without autism too, and they are also great.  One day I’ll write a blog about my none autistic friends, but for today, I’m celebrating those with asd.  😉