All posts by myperfectlyimperfectfamily

Feeding Time at The Kings

We meet many families with autistic youngsters, and a common theme for a good old fashioned moan seems to be mealtime dramas.

‘The family that eats together stays together,’ or so the old adage mocks.

As a young woman, eagerly anticipating family life, it was mealtimes that captured my imagination.  In my mind’s eye I saw a brood of strapping boys, all wearing dungarees for some reason (wholesome, traditional….’normal’).  All clamouring for ladels of the home-cooked bounty spread before them.  Broths, stews, steaming pies, home baked bread with creamy yellow butter.  Cakes and fruit afterwards.  Cheese.  Endless courses, bountiful abundance.  My idea of a vital, thriving family centered around the food that would sustain it.

Despite the odds stacked against us, I still enforce the rule that the family eat together whenever possible.  The stuff that my family is eating, and the enthusiasm with which it goes ‘down the hatch’, however, is a far cry from my vision of domestic bliss.

We have one Type 1 diabetic (Richard), one vegan/vegetarian (depending on the strength of desire for cheese and eggs at the mealtime in question) (Rosie), one finger feeder who carefully selects only dry, brown food, untouched by other foodstuffs (Lenny) and one fan of soft, mushed together ingredients who is apt to choke on anything too chewy or crispy (Daisy).  And then there is me.

After many years of encouragement, Lenny is now willing to join us for meals.  For a long time he would  roost beneath the table, nibbling at a Yorkshire pudding or a piece of breaded chicken.  Before that, he would run naked around the dining room and I would follow, sneaking morsels into his mouth like a determined mother bird feeding a highly excitable chick.  So nowadays to see Lenny loitering with the family (always standing; to go so far as placing his bottom on his allotted seat would perhaps be a step too near commitment), sneaking suspicious glances at his plate of brown, dried goods and occasionally taking the odd begrudging bite, this fills me with a glow of satisfaction.

Daisy is a grabber.  She loves to eat and makes no distinction between her own plate of food and the next person’s.  For mealtimes, her wheelchair is brought to the table, and her lap belt securely fastened before the food is brought in.  I’m not entirely sure that this is legal, but if anyone is willing to devise a workable alternative, then I am all ears.  Her mushed up version of the family meal is spoon or fork-fed to her, allowing lots of time for chewing and swallowing.  Daisy has to be seated just over arms-length away from the table, to avoid the lightning fast thievery that would result in teatime revolution.  Even with time for chewing and swallowing, she tends to store food hamster-style, releasing a masticated glob the moment she is offered a drink.  This offensive by-product must be swiftly spirited away to avoid offence to other diners.

Of course, it is not mere nutritional diligence that drives me to force this ritualistic get-together at the end of each working day.  I hate the thought of t.v. dinners, of each family member ‘s daily experiences remaining unshared, conversation sacrificed to the echoing canned laughter of sit-coms.

Daisy is none-verbal, so I often volunteer snippets from her home-school diary to provide a glimpse into her ‘world away from the family’. Lenny answers direct questions randomly, choosing his response from a repertoire of learned phrases that often bear no relevance to the question.

‘What did you do at school today, Lenny?’


‘Did you learn about tigers at school?’

‘Bob the Builder!’

‘Have you been  singing, ‘Bob the Builder’ at school?


Rose is a teenager with Asperger’s, so, unless she is in the mood to converse (a joyous turn of events bringing a carnival atmosphere with it) her input can be limited.

And Richard is a man, so….

So valiantly, I continue!  Each day a variety of dishes are rustled up, mushed up, separated so that one component does not touch its neighbour (heaven forbid!) and the game of conversational encouragement is played out again.

But it is paying off.  Who would imagine that an unusual family like ours could regularly, and without alarming incident, eat out at cafes and restaurants?  Or join in group picnics?  For me, these simple pleasures underpin the happiness of family life, and I am not prepared to relinquish them without a fight.



My best friend Will  is obsessed with ‘The Amazing Spider Man 2’.

I’ve bought  him a copy on dvd for Christmas, and I’m really excited about watching him unwrap it.  You may guess from this that he loves the film.  Wrong!  He absolutely hates it, and this hate springs from his love of the old series.  Will talks about his dislike for The Amazing Spiderman 2 all  of the time, though.  Just like all roads lead to Rome, all conversations lead to the fact that The Amazing Spiderman 2 is a terrible film.  The present is a joke, but on holiday this year he said that he would probably watch it again, just to make sure that it is actually as bad as he thought it was.

Will has Asperger’s Syndrome like me.  I have had many obsessions in my life, and it seems to be typical of people with autism.

The first book that I started to look at as a child was a book all about animals, and when I pointed to the animals to name them, I always said the same words (in exactly the same voice).  “They’re called seals!” I used to say, enthusiastically, as I pointed to a picture of a seal.  And then, turning over the page ‘There’s a big seal…and a little seal.  I love seals!’

I did love seals.  Whenever I was given a piece of paper and a pencil and asked to draw someone a picture, I drew exactly the same picture, over and over again.  It was a picture of a seal behind bars, crying.  Mum used to be quite concerned, and suggest that I draw a more cheerful picture, but the picture of the seal crying in the cage just had to be drawn, again and again.

I had my own toy seal, Barbara.  When Mum first found out that she was pregnant with me, she was working in an office.  She did the pregnancy test in her lunchbreak (in the ladies toilet of Burker King of all places) and then came back to her office.  She made a call to Dad to tell him the news, and then she told her colleague, who was a nice lady called Barbara.  Next Barbara went out for her lunchbreak, and when she came back gave Mum the small grey seal, my very first present.

I loved to hear this story when I was little, and called my seal Barbara.  It fit so neatly into my hands, I carried it everywhere for a long time (quite a few years).  The first time that I ever had a news story about me diagnosing myself with Asperger’s Syndrome, I was carrying Barbara.  When I got my first Children’s Champion award at the age of 10, I can be seen carrying Barbara in the picture.  In the end I had to break the habit of carrying Barbara around, because some kids at school made fun of me.  I knew that I was too old to carry her anyway.  It was quite a hard habit to break, and my hands felt very empty for a while until I got used to not carrying her.

These are obsessions, though.  Everyone has mild obsessions, but people with autism stick with them.  This is one of the reason many famous inventors have achieved their goals, because they will not let their obsessions die.  They have to keep going and going until that lightbulb is invented, or that theory of relativity is all sorted out in their heads.

My brother has obsessions too.  At the moment, it is a children’s programme called  ‘Toby’s Travelling Circus’.  Its a really creepy show actually, but he loves it.  On a visit to Toys R Us, he chose two identical copies of the dvd.  She tried hard but Mum couldnt persuade him to put one back.  Lenny chews his favourite dvd’s anyway, and ruins them quite fast.  She thought the second one would be a good back-up.  When he got home, he took the paper from the case, cleared all of the cushions from one of the sofas, and placed the paper in the middle, like a holy shrine or something.  He freaked out if anyone tried to move it, or even to sit on the sofa.  It was like the whole world had to worship Toby.  For quite a few weeks, as soon as he got in from school, he would go straight to the piece of paper to check that it hadn’t been moved.  He just stared really lovingly at it, he didn’t even want to bother watching the dvd any more, just staring at the picture and smiling!

Once (when Daisy and Lenny were in respite) Mum took the paper out of a dvd that she had really enjoyed, Behind the Candelabra with Michael Douglas) and she put it in Toby’s place on the sofa.  That’s our kind of humour!

That’s all I can think of to say about obsessions for now.  Thanks for reading, and for all the nice comments!

Defying the Odds

Little miracles are everywhere, bright jewels nestling in the grey dust of our everyday lives.  I often try to take time to re-examine my jewels, the gifts that Providence has delivered.

In 1996 I was quite ill.  Physically, mentally and emotionally.  I had just experienced an ectopic pregnancy, ruptured Fallopian tube and emergency removal of both.  My fertility expectation had at least halved, and I was warned that a further pregnancy could follow the same route.

It seemed that all was lost, even before my life had properly got going.  I plodded on with my boring job at a London solicitors.  I had a hectic life which felt quite empty, and I wondered if my relationship would survive the decades of childless wilderness that seemed to stretch before me.

In 1997 I became pregnant again, and after a few dreamy weeks of expectation, bleeding and stomach cramps seemed to herald my worst fears.  Another emergency laparoscopy, a plummeting of my mood and a terrible verdict from the consultant – “There’s nothing there.  No baby.  Sometimes these things happen, its nature’s way.”

An ultrasound scan was arranged for two weeks later ‘just to be sure’ and the night before this scan I found that I couldn’t sleep.  I was inexplicably excited.  Multiple fractured dreams accompanied my on-off sleep and in one memorable scenario the lab-coated lady  conducting my ultrasound was none other than my late Grandma.   I instinctively went to hug her, I hadn’t seen her in so long!  She shook her head quickly as though to warn me not to give the game away.  As she performed the scan, she turned and winked at me in just the way she would have in real, waking life.  I had an ally!  A helping hand.

Not surprisingly, the actual mistress of the scanner turned out not to be my dear departed Grandma but was a pleasant lady all the same.  I tried to read her expression as she examined the screen and when she turned it towards us, Richard and I both gasped in unison.  A pulsing blob, amid the grey dots that represented my uterus.  A jewel in the ashes.

This blob was Rosie of course – what were the odds?

And when Daisy arrived two years later, we were back in my home county of West Yorkshire.  A long and terrible labour followed by an emergency caesarean section had left me with a general sense of exhaustion and a tiny, floppy baby.  Still covered in fuzzy peach fluff, Daisy was silent.  She took in her new environment like a wise owl-baby.

The hospital staff left us to it at first, me and Richard looking lovingly at Daisy and her looking around, tiny lips pursed and fluffy face tranquil.

Then they moved in, sometimes in groups or pairs, sometimes alone.  They prodded and they poked.  They wrote notes.  I began to feel protective and asked a junior registrar to leave when he stuck a finger in her mouth.

Despite my state of exhaustion, I sensed a problem, and when Richard was gone I summoned a nurse who explained to me that my baby had a syndrome, probably Downs or something similar.  It was impossible to tell how able she would be, what she would or wouldn’t be able to do, though autonomous mobility seemed unlikely.  Her muscle tone was very low, and there seemed to be some physical irregularities.

Almost a year later, Daisy was diagnosed with Kabuki Syndrome, and at the time there were only two hundred known cases in the world.  This statistic has changed a lot in recent years, but, at the time, I couldn’t help thinking, what were the odds?

She was a vulnerable baby and soon notched up an impressive list of itises.  However, she fought these off like warrior, defied the expert’s prognosis that she would never walk, and discarded her wheelchair just before her fifth birthday.

Jumping forward another two years (there is a definite pattern here), and my lone, valiant fallopian tube had come up trumps again.  A son made our family complete.  And what a son!  Vital and strong, he could support his own head at birth.  We called him Leonard (Lion-Heart) because he growled rather than cried.  He took to the breast like a wolf-pup (the delicate girls had needed much persuasion) and he seemed to me a living vindication – Daisy’s difficulties couldn’t be pinned on me!  Rosie’s idiosyncratic ways were merely a coincidence.  Here I had strong and healthy son, hours old and already surpassing developmental milestones.

At that point if anyone would have forewarned me that this champion child would grow into the most challenging, most thoroughly autistic young man imaginable, I would have laughed in their face.  After all, what were the odds?

Hey, I Have That!

Rosie here, me and Mum are taking it in turns to blog.

Sometimes people ask me what it is like living in such a strange family.  To me it’s not strange at all,  its all I’ve ever known.  I would have said ‘To me it is normal’, but after my Tedmed speech, ‘who would want to be normal?’ seems to have become my new catchphrase!

Mum is obsessed with the subconscious.  She is a hypnotherapist and is always going on about our consciousness-filter.  We let in what we want to, keep out what we don’t.  If we are feeling down our filter cuts out all the good stuff, so that we can only see the bad.  If we feel good, our filter gets rid of all the bad stuff, and the world is great.  I’m not sure how much of this stuff I believe, but I know that when I look at my brother and sister, I only see their good qualities.  Most of the time.

Daisy is great.  She is the pretty one in the family for sure.  Her laugh is like a tinkling bell and everyone who sees her says ‘Aww, so cute!’ – I could be jealous but I think that too.  Lenny does whatever the hell he wants, so I could be jealous of this as well.  If he gets into the kitchen all hell breaks loose; he might turn the taps on for the pleasure of seeing the water dripping over the side; he might get a full bag of rice (mum gets massive ones from the Asian supermarket) and break it open, scattering the rice everywhere. He loves doing stuff like this, does Len.  Who knows why?  All I know is that sometimes if we join in his activities instead of telling him off it’s great, like a food fight or something.  He knows what he wants to do and his isn’t going to let a little thing like social norms get in his way.

Dad  is great, he works hard for us, and also, when he gets home from a hard day’s work, if he sees Mum all tired and harassed, he takes over, like takes Daisy and Lenny out swimming or to the park or something, so that we can have some quiet time.  I  know that its hard for Mum and Dad, looking after us three, but they pull together and support one another.

So this is the story.  Lenny was diagnosed with autism when he was super small, like three years old, though it had been very obvious since he was two.  Everyone was relieved when he got the diagnosis, because the waiting was over and Mum and Dad could get more support.  We got a lovely book called ‘Little Rainman’ which explained autism from like a child’s point of view.  Though I was really young (seven, nearly eight) I got it straight away.  The book was told by a little boy called Jonathan (though he couldn’t speak, his Mum had given him the words, just like we sometimes have to do for Daisy and Lenny).  The book explained how he loved to spin, how he was afraid of loud noises, but liked to make even louder noises.  How he sometimes felt uncomfortable looking into people’s eyes.  I read the book once.   ‘Hey, I have that!’ I said to Mum.  Mum looked at Dad and Dad looked at Mum.  It was like ‘oh’.

About a year later I got my own diagnosis of Asperger’s Syndrome, but from the very start the condition was explained to me in a positive way.  All the greatest movers and shakers in history had Asperger’s apparently, Mum and Dad told me.  Einstein, Eddison, Mozart, Di Vinci.  How could I think of it as a disease or a disability when it was described to me like this?  As I got older, I learned that unfortunately some people are challenged by difference, and want to look down on anyone who doesn’t fit. I don’t believe that the world HAS to be like this, though.  My vision of the world that me and my siblings will grow into is one of acceptance, love and celebration.  Who’s in? ♥

An Empty House Full of Love

“Have you lived here long?” new visitors to my house often ask.

To the untrained eye, I have to admit, it looks pretty bleak.

Living room – two leather sofas, one leather recliner, covered each day with washable and brightly coloured throws.  One display unit, stripped of display items.  One huge tv, situated high above the hearth, as high as possible, yet still daubed with yogurt finger prints.  Spinach green carpet, freshly cleaned.  Cleaned once every three weeks or so, as it goes.  I’m on first name terms with my carpet cleaner (Anthony…black coffee one sugar).

To the dining room!  A corner suite in pale green leather, bolted to the wooden beams.  A dining table, similarly bolted to the floor.  Six fold away dining chairs, folded away when not in use,  stored in a built in cupboard, locked.  A reinforced curtain pole with heavy blue curtains, lovely to swing on, most often to be found in a billowing crumpled mass on the floor.   Family photos and home produced paintings, framed but with no protective layer of glass to preserve them into antiquity.

The kitchen.   Standard, though locked with a number combination that is changed every third day or so.

Yes, fairly bleak.  But all of this empty space is filled with love.  As much room as we can spare for our children to run, bounce, roll, jump and scatter various substances (‘sensory play’ is the new nicety) without breakages or injury.  A home brutally customized in order that our children can remain as residents, basking in the love of a united family.

My husband, Richard and I are deeply proud of all three of our unusual children.  This empty house, full of love, strikes me sometimes as a greenhouse for exotic plants.  Orchids, perhaps.   Uncommon, exquisite, and requiring ultimate care and attention in order that they may thrive.

Twelve year old Lenny (Leonard officially, if ever he were to become a doctor…a destiny that seems less and less likely with each passing year)  has classic autism.  With no language skills and extreme sensory issues, life presents many challenges for him.  Throw rapidly progressing puberty into the mix and you have a recipe for malfunction.  However Lenny continues to thrive, to enjoy life through his finely honed senses, if not through intellect or communication.

Right now he sits awkwardly on my lap, his man-sized body squeezing into this preferred babyhood position.  He runs calloused hands (bitten, licked and sucked since infancy) through a dish filled with soft petals of edible confetti.  This activity will engage him for as long as it is allowed to continue.  Lenny’s concentration is required not only to process the delicious sensory feedback, but also to keep his older sister, Daisy, at bay.  An unguarded moment could result in fistfuls of his pastel treasure being pilfered.

Daisy is fourteen, and her love of the sensory rivals her brother’s.  Physically, though, she is his opposite.  The majority of each day for Lenny is spent in a state of muscular tension, and his body builder’s physique bears witness to this.  Daisy is soft and pudgy like a twelve month old baby.  She has severe learning disability, no language or understanding of language, a rare genetic condition (Kabuki Syndrome) and a physical beauty which melts the heart of all she meets.  A cascade of golden curls, china blue eyes and a tiny pink bow of a mouth (when she was a toddler, I fed her with a doll’s spoon.  Even the tiniest of baby spoons could not be accommodated.)

Doll-like and gentle as she looks, Daisy is now riding a roller coaster of hormones into her mid-teens, and has developed teenage attitude accordingly.  What she wants, she eventually gets.  If traditional methods (sweet smiles, sloppy hugs, crying….biting parent’s face) do not deliver, then she is happy to resort to a new and far more effective form of persuasion.  Bashing her head repeatedly against a hard surface is a surefire way to gain immediate control of a situation.  The next step is a padded helmet in which to squish her golden curls.  None of us want that.

And then there is our eldest daughter, Rose.   Rosie is the reason we are here today,  providing a guided tour of our empty home and its strange inhabitants.

At sixteen, Rosie is small in stature with an hour glass figure to die for.  Her half shaven hair is turquoise in colour, the latest in a variety of experimental shades to celebrate her graduation from school to college.  A self-diagnosed (later medically confirmed) Aspie (Asperger’s Syndrome), Rosie has a depth of intelligence and wisdom that is uncommon in humans, and almost unique in one so young.  EMMY winning presenter, writer, illustrator, political campaigner and lately standing ovation commanding TED speaker, she has made her parents very proud.  It has been a fascinating journey for Rosie who has come so far so fast.  It has been a journey that her parents have been privileged to share with her, and one that her siblings are completely unaware of.

Welcome to my bleak home, and to my wonderful family.  My pride in all of us makes it very easy to share this unlikely story of success.