All posts by myperfectlyimperfectfamily

How Bad is Yours?

A good learner need never be an expert – all that there is to learn, on any subject, always outweighs the sum of that which we have learned so far.  That said, autism is probably my specialist subject (coming a hair’s breadth close second to making curry) and whenever I meet people with an interest I am happy to share my experience and exchange information and ideas.

I met and began chatting to a mother with a pre-school son the other day, and through the course of our conversation I established that this young man had recently been diagnosed with autism.  The diagnosis was so recent that the Mum I was chatting to had not fully absorbed, and did not fully trust the expert’s opinion.  Her words were an armour of defence; ‘he doesn’t say many words but he knows exactly what I mean when I’m speaking’ – ‘I know lots of four year olds who don’t like looking at story books’ – ‘if he wants to watch the same clip of the same show over and over on his ipad, nobody’s going to tell him he can’t’.

I nodded and smiled at these sentiments; I remember experiencing similar thoughts during the time that my children were being diagnosed.  I would hop back and forth, back and forth.  One day I’d be all for accepting autism (or asperger’s, or Daisy’s rare condition, Kabuki Syndrome), with a sureness that I and the world at large could adapt to any differences that the children might have.  The next I would take up a defensive stance, how dare these people tell me that my child was abnormal?  He had five fingers on each hand (or should that be four fingers and a thumb – he’s not a monster), five toes on each foot, the correct number of limbs, he walked, he ate mush, drank milk, cried and laughed, what did they want from him, blood??  And then I would go back to observing subtleties, the way that he would spin a toy car’s wheel obsessively, repeatedly, for very long periods of time, with little regard for the toy as a whole.  The way that she ran around in circles, seeming oblivious to the other people in the room, happily shouting out little snippets of conversation from her internal, imagined world.  The way that her bright blue, almond shaped eyes didn’t seem to fully focus on my face as I sang her a lullabye.

It being a school day, Lenny wasn’t with me on this occasion, as I chatted to the lady who pushed her son on the toddler’s swing in our local park.  I told her that my son had received his diagnosis at a slightly younger age than hers.  Lenny was almost three when it was officially acknowledged that he was autistic.

‘He must have been worse than…(let’s call him Oliver) then, if he got diagnosed sooner.  How bad is he?’

‘I wouldn’t say worse, and he was never bad,’ I replied, ‘but he was very different from (let’s call him Oliver).’

‘So was he better than (let’s call him Oliver)?’ she asked.

I knew what she meant.  Was my son closer to, or further away from the norm than hers?  And if he was further away, did he grow up to be nearer?  And if he was nearer to the norm, did he continue along that socially acceptable path, or did his development go askew, meandering between the ‘acceptable’ and ‘something to be worried about’ arcs of the much studied childhood graphs.   If to be outside the norm is ‘bad’ and to reside within that terrifyingly narrow band ‘good’, and if there can be ‘bad’ autism or ‘really bad autism’ as opposed to having a child with a charming ‘essence of autism’ then what does this mean for our children?

I liked this lady a lot, and I fully empathised with her mixed feelings about the diagnosis that her son had just been given.  I’ve heard many professionals use similar language over the years, though, and I feel less forgiving about that.  Regarding my son’s toileting habits, in a development meeting, ‘he used to be really bad, but slowly he is getting better.’  ‘He’s never been ‘really bad’,’ I countered, meekly, ‘Just that he didn’t understand the necessity of toilets.  He’s learning that now, which is good for us.  Probably all the same to him, apart from the rewards he gets.’ A concilliatory smile from me (are you with me? are you on my side? are you on my son’s side? do you accept that ‘autistic’ and ‘bad’ are not interchangable adjectives?  Are we all enjoying the meeting?  Should I get my coat???)

In autism parent support groups (a meeting of minds that I now avoid like the plague) I have heard adults competing for most put-upon parent award.  ‘He’s a nightmare.’  ‘His behaviour is horrendous.’ ‘Worse than Rainman!’ (Was Rainman ‘bad?’ I seem to remember Raymond Babbit being very polite, very well turned out, and exceptionally good at poker).

‘Bad’ means evil.  If a person is ‘bad’ they have evil intent, they are wrong-doers, criminals with a disregard for all that we perceive as being ‘good’.  If the weather is ‘bad’ it doesn’t suit us, we cannot wait for it to go away, and be replaced by something better.  The words that we use with regard to our children are important, for many reasons, but chiefly because they are often by our side, listening in, building a picture of what it means to be themselves from the casual observations that we make about them.

My children’s behaviours are often unusual, chaotic, messy, loud, but I can honestly say that there is nothing ‘bad’ about them.  Regarding my son’s autism, if I had to define it at all, I would use the word ‘classic’ like a well-tailored suit, the original and the best 🙂

 

 

 

 

 

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Teaching and Learning, A Lesson in Love

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My fourteen (almost fifteen) year old son Lenny is  classed as being non verbal.

His relationship with language is unusual, and has caused me (and, of course, him) much frustration over the years.

It is difficult to place Lenny at any one point on a developmental timeline.  His profile is so spikey it could be used as a weapon.  Skills in relation to balance, escapology, technology and cunning are disproportionate to more classically simple accomlishments such as eating with a spoon or mastering the mysteries of continence.  There are times when I believe that his learning is a comletely ad-hoc ‘hit and miss’ affair; he tries something once, and if that method works, then this is the way that he will fulfil the task until the end of time.  If his stab in the dark method bears no fruit, then he will abandon the task altogether, dismiss the fruit, and return to a more reliable endeavour.

But every so often motivation overcomes Lenny’s force of habit, he will try a new way, his family will be shocked into silence, watching as the new, magnificent skill is unveiled, with no sense of showiness or pride, just a revisited determination to get into that locked kitchen, to wear that particular shirt, or to repeat that line of the song which will provide the magical clue for Mum to select from Spotify the tune of his dreams.

Because I am a human, and therefore grossly flawed, sometimes I sullenly reflect on the things that I have missed out on, being an ‘Autism Mum.’ I try to stay away from this mode of thinking, this delicious self pitying melancholy which does nothing but convince me that I am a victim of circumstance.  I don’t allow my children the indulgence, but sometimes find myself irresistably pulled towards the magnet of ‘Why me?’

If Lenny were to have a voice (a regular, voice, one that asks questions, supplies answers, philosphises, chats about trivia, etc….as opposed to one that occasionally screams ‘Giggit!’ (that is ‘biscuit’ in Lenny’s language)) what would I have him say?

Some time ago, I decided to teach him to say ‘I love you’ because that is what I would most like to hear (selfish, huh? how about what would be the most useful for him to make his needs met in this world??)

When I tucked him into his bed on a night, I would kiss his forehead (much to his disdain) and say, ‘I love you Lenny.’  Not leaving his room until he repeated the sentence was my cunning plan, as I knew that he wanted me gone as soon as possible.  Eventually, I would receive a very irritated ‘I love you Lenny!’ in return for my endearment.  ‘I love you, Mummy’ I would correct, and loiter in his room, until he angrily said repeated the words.

Angrily repeated the words ‘I love you, Mummy’.  There was clearly something wrong with my teaching.

You will be happy to know that eventually I abandoned my determined lesson in love, and stepped from bossy teacher’s shoes to the more exilerating role of student.  I allowed Lenny to teach me how to love.  I stilled myself, listened with my whole being and not just my ears, and noticed how he chose to express his feelings for me.

‘I love you’ is not love, just as the word ‘ocean’ is not the ocean.  These are signposts.  I can say ‘I love you’ with anger, sarcasm, bitterness.  I cannot show love with anger, sarcasm or bitterness.  I can say the word ‘ocean’ a million  times, but nothing compares with the experience, standing at the edge of the sea, being mesmerised by the frothy, living rolls of the tide, smelling the brine, hearing the gulls. Our words are signposts, nothing more.  Remove the signposts from our world and we are free to examine that which they once pointed to.

Lenny tells me that he loves me every day; he always did.  He sits very close to me, caresses my face with a tenderness made all the more loving and sweet by the fact that his hands are huge and rough due to constant gnawing and biting.  He puts his cheek next to mine, so that the skin of his face touches mine, he closes his eyes in an exression of pure bliss. The act actually makes my heart ache with love.  This is real love, the act of loving, love in illustration.  Beautifully illustrated.  Thank you Lenny 🙂

Big Red Pram

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I have a clear memory of walking through our village, pushing a big red double buggy containing five year old Daisy and three year old Lenny.  Rosie, who was a very slight and elfin-like seven year old, would often tire of walking, or wanting to join in the ride, would perch herself on the molded handle of this contraption, facing me, the work-horse, and entertaining me with her bizarrely delightful conversation.

Despite the obvious problems associated with travelling in this way; I couldn’t have been happier.  All that my heart held dear was contained in my big red pram.  I was in complete control – all of our daily necessities (nappies, snacks, toys for distraction, and the ever-present bumper pack of pampers wipes) rested reassuringly on the netting underbelly.  I never had to think about troublesome matters like parking meters, acts of rebellion or denial of entry.  If the wheels of the buggy could navigate the terrain leading to any destination, and the energy source of my optimism was still in full flow, then we could go.  If one of my unusual offspring decided that compliance wasn’t the order of the day, then I could bodily lift up that particular child, secure him back into the pram (yes, it was usually Lenny) and we could be on our our merry way, to a more satisfactory location.

Us ultra-busy, doggy-paddling-through-each-day parents of toddlers and young children should never make the mistake of assuming that our roles as decision maker, protector, feeder, dresser, educator, advisor and soulmate are anything but temporary; I see that now.

With Rosie making the final preparations for her independent life at university, and conversations about Daisy and Lenny’s eventual care package surfacing regularly, I find myself looking back to those days of the Big Red Pram wistfully.  How comforting it was to be able to keep the dangers of the world at bay, to board and retreat to the sanctity of our home whenever things became too much.

Now, I have to begin to trust the world – or at least the people who make up the part of it that most matters to my children.  I have to learn to use my energy to help to plan, advise, and to facilitate as much independence as each child can strive towards.  No easy task.

If only there were a red pram big enough, and an ageless, eternally energetic version of myself to push it along, I often muse.  But no, I guess that wouldn’t be quite right either…

 

 

 

 

 

 

 

 

 

 

 

 

Brilliance and Recognition

Our words of appreciation are life-giving water to the seeds of brilliance in our children.

The only negative aspect on this journey with my differently-abled children has been the leaning towards pessimism by the majority of people we meet. In an attempt to show understanding, or solidarity, people often say to me (in front of my children) – ‘It must be very difficult for you,’ or (with a sad shake of the head) ‘it’s such a shame.’ Worst of all, ‘You’re a saint, I couldn’t do it.’

As people who know me well can testify, I am no saint. And anyone could ‘do it.’ In my situation, they would have little choice. More than that, anyone in my shoes would eventually begin to enjoy and to celebrate each small victory, each small achievement. They would grow in areas that in other circumstances it would be very difficult to make advancement in; empathy, understanding, the realisation of their deepest, truest values.

Do people imagine, for one moment, that the miserable sentiments they offer in lieu of kindness have no effect on my children’s self esteem, or on our family’s collective mood?

Meetings about my children’s development are often built around a list of problems. Annual medical reviews begin with the question ‘So, tell me what he/she can’t do?’ Applications for extra support require parents to spend many hours painting a ‘worst case scenario’ picture of the hellish lives that their children have dragged them into. Unless we guard ourselves against it, this negativity can drip into our psyches like Chinese water torture, poisoning the atmosphere within the bubble of our family life.

For even the most academically brilliant, talented, creative, energetic individual, an intense beam of focus and constant reminders about what that person struggles with will, eventually, level their self-esteem.

A meeting with a group of inspirational mums brought this home to me yesterday; a young person’s self-esteem is his most valuable asset. Whatever we focus on grows in significance – when all of the world’s focus is on a DISability, how is self-esteem to grow in strength and resilience? My call is for an about-turn in the way that we see people who are outside the ‘normal range’ in function, intelligence, social know-how, or any other area. Let’s focus on the brilliance of each individual, and celebrate that. From learning to manage personal cares, to discovering a clean and cheap power source that may save our planet; each achievement should be recognised and celebrated, so that young people become familiar with that wonderfully satisfying feeling -‘I did it, and I’m proud.’

Lets Get Messy

I spend many hours every day cleaning up after my kids. This is not a moan, just a fact. When my resilience is low and my hormones have taken hostage of my reason, the weight of these cleaning hours, past, present and future, can seem debilitating.

I know that most parents lament the burden of cleaning and tidying, but my children take messy to a new and exciting level. Their extremely sensory natures compel them to sprinkle, flood, smear, rub-in and scatter. They are artists in their own way, their materials being whatever is to hand; wood-shavings, pet-food, corn-flakes, flour, sugar, earth, sand, shampoo, water, foam and anything within reach of their lighting fast little hands. Their canvas; the carpet, the walls, the smooth, curved interior of the bathtub. The very air itself, as it reflects magically floating dust-motes in shards of brilliant light.

As with so many other aspects of our life, the children have forced me to a new understanding. Peeking at the world through their artist’s eyes, I often glimpse chaotic beauty in their creations.

From a very early age we are conditioned to associate order, tidiness and cleanliness with goodness. Their evil opposites, dirt, mess and disorder, are frowned upon in our society. Pity or disgust are metered out liberally to their orchestrators. But what if it’s all a con? What if it really doesn’t matter if there is dust on our surfaces or cornflakes on our carpet? These are the little glimpses of a bright new, guilt-free world that my children are able to provide. Through the kaleidoscope of their artisan vision, I often see chaos and am thrilled, inspired, and (best of all) freed of the restrictive burden of conditioning.

Once, Lenny nicked a box of icing sugar from the pantry. We fitted the kitchen door with a bolt when he was three, but he soon cracked that. Now a number combination lock (the code for which is changed each week) bars him from the goody-laden haven of the kitchen. In theory, only someone with highly developed mathematical skills or a Sonic Screwdriver could regularly decode this lock, but my son, with his ‘severe learning disability’ and without the help of Doctor Who’s gadgets, somehow manages.

We found him in the dining room with his ethereal prize. Not only was every surface covered with the fine, sweet dust, but so was the air itself. A haze of soft sugar made each breath a sweet sensation. I was at first despairing, then captivated. Just as a gentle snowfall reinvents the natural world, the icing-sugar transformed my conventional dining room into a fairytale wonderland. I quickly arrived at the decision that I would let Lenny enjoy his creation for a few hours before the intensive clean-up operation. By early evening there was hardly a trace of the icing-sugar, and the dining room had been treated to the type of deep-clean that I otherwise would never have summoned the energy up to organise. We found Lens in his bedroom, licking his sweet-coated limbs like a very contented cat.

Recognising Daisy and Lenny’s absolute need to explore the world in this fashion, I now take control of messy time. I decide when I am in the right frame of mind to let the chaos commence. I decide which areas the children can use to scatter, and I make sure that the materials they use are ones that will only create a temporary work of art. To try to teach-out this behaviour would be futile, and (I honestly believe) cruel. A bag of uncooked rice scattered on a laminate floor can make for an hour of sensory thrill, and will take approximately the same time to clear up. If I weigh up this investment of time and expenditure against the pleasure derived from the experience the deal seems fair enough.

I’ve not come across many children quite as sensory as my younger two, but I am sure there are some out there. My advice to any parent who recognises this need in their children would be to follow my lead; allow for messy time. Go nuts, join in!

Is Autism a Disability?

In Glasgow recently, at a Celebration of Autistic Talents conference that we attended, a young boy asked the following question of the speaker, who was an author and mum of two autistic children.
‘Is autism a disability?’
The lady speaker had misjudged the tone of the event, I rather thought. Her speech about life with her two children erred on the side of negative; she described her son as ‘a complete nightmare’ ‘worse than Rainman’ and went on to say that she wouldn’t wish an autistic child on her worst enemy.

How this speaker could have got it so wrong, I am not sure. Having three children on the spectrum myself, I have a good understanding of the extreme challenges that parenting a child with autism can present, and these can never be underestimated or pretended otherwise. A fundamental resolution that I made very early on in my journey as an autism mum, though, was to NEVER speak disparagingly about the children, or about autism in general, in front of them. What message does this give? That something so intrinsically entwined in their personality (the autism) is bad, distasteful, a source of misery and stress.

I found out later from his teacher that the young boy who had asked the million dollar question had autism himself, and had, up until that point,never considered himself to be disabled. He was a charming, very academically able young man. He wasn’t being sassy, he was genuinely surprised to have this label of ‘disabled’ cast over him like a dingy blanket, especially here, at an event where many kids with autism were attending, and had been primed by their teachers to receive praise for their achievements.

She hadn’t really thought it through. In all probability, she was at the event purely to promote her new book. I can’t really say that her speech filled me with any burning desire to rush out and buy a copy.

But to get back to the young man’s question, ‘IS autism a disability?’

The events of that day caused me to think long and hard about the issue. The wishy-wishy conclusion that I eventually arrived at was ‘Not necessarily, sometimes, kind of, in a way.’

Anyone with a foot in the world of autism will have met people who they would definitely consider disabled, and most people will have met an autist who is quite autonomously getting on with life, enjoying a successes in personal interests, career and relationships. I guess my youngest and eldest children would illustrate this difference quite well. The more I thought about the disability question, though, the more I realised that every one of us needs support. Without practical, medical and social support we would not last very long. I see a world populated only by Ray Mears, Bear Grylls and that warrior woman from The Walking Dead. I would estimate that having to somehow procure my own food and water from a totally natural environment I might last for about a week, or maybe a bit longer in Autumn (blackberries) I was just going to say that my husband, a keen fisherman, would fare a little better, but then I remembered that, as an insulin dependent diabetic, his time on this planet would probably amount to about three days. Even Bear Grylls might struggle to extract natural insulin from wild boars without sterile medical equipment.

So, every one of us needs support from all kinds of other people, if we are even to survive, not to mention enjoy the luxury of comfort and happiness. That this is true of our autistic brothers and sisters should be no surprise.

Our society is a delicate, supportive web. We are not lone creatures, we need the support of our communities to function in any way.

We must get used to the fact that, although the type of support that we give to people with autism may differ from the help that the average person requires, in an ethical, credible society this difference should not create a problem. It should never be a case of those in power administering patronising charity. My husband doesn’t plead or show excessive gratitude when he picks up his diabetic goody bag each month from the chemist, and, when putting forward his list of what he needs to be able to function, neither should the person with autism feel that he has asked for anything above and beyond that which he is entitled to.

When we are able to think clearly about the type of benefits that we receive through being part of a rich, compassionate and fair society, it is much easier for us to challenge ourselves, and make some resolutions about what kind of gifts we must weave back into this web of support that keeps us safe, happy and well,