Seeing the funny side

Flashback; 2010.  Something in the expression on my friend’s face changes so I stop talking and turn to follow her gaze.  Why is everyone in the soft play centre looking over towards the ball pool in utter horror?  And then I see what they see. Er, yes, that is my 4 year old daughter.  Singing at the top of her voice about the Numbertaker’s number sucker-upper.  Whilst wielding a long stick.  Which belongs to the daddy in the ball pool, who is actually blind, and totally unaware that my daughter has claimed his white cane as her own. It’s classic laugh or cry. 

I laugh. I can’t help it. Having a child with Autism has brought out the giggler in me. 

The open-mouthed shock of the other parents in the play den just adds fuel to the giggle-flames.  I know what they are all thinking; something along the lines of OMG I’m so glad it’s not my child who stole and then shamelessly waved around a blind man’s walking aid.  But there’s a certain guilty pleasure in being an onlooker when somebody else’s child is misbehaving, so much the better if the child is mercilessly embarrassing their parents in public!  It’s a deliciously naughty cocktail: part relief that the little monkey is someone else’s problem; part self-satisfaction, (your own child is an angel, of course…well today anyway!) and a generous schlop of curiosity – how on earth will she deal with this?  Mum is shaken and the child is all stirred up…this is fun!  We sit back, take a sip and watch the drama unfold.  We enjoy it.  Because we know that next time it will be our turn to be embarrassed, our child breaking the rules and our moment in the dreaded spotlight of shame.

The trouble with toddlers and kids of all ages on the Autism Spectrum, is that they are unreservedly self-centred, (the word Autism comes from the Greek word autos, meaning self), which means that they do whatever they want to do, without considering the feelings of anyone else.  In fact, most autistic children are totally incapable of imagining how anyone else but themselves might feel, even if they were interested- which they’re not!  This is why my Boo thinks it is perfectly OK to go and sit at another family’s table in a café and take what she fancies from their plates (oh ground, please swallow me up now!) We are lucky that Boo has very good language and communication skills, (some children with ASD have no speech whatsoever), and of course we have explained to her that she shouldn’t take things that don’t belong to her.  But she simply doesn’t give a monkey’s- the compulsion to do what she wants is far stronger than the knowledge that she isn’t supposed to do it!

Tempting though it is to pretend I don’t know her sometimes, I usually find that honesty is the best policy in these situations!  When I explain that Boo has ASD, people are perfectly fine that half their lunch is missing, and most of the time they find the incident rather funny.  This kind of thing happens to us all the time, and after the initial shock at the audacity of the child, laughter usually follows, mine and theirs!

Another of our family’s favourite Boo-isms, was on holiday in Whitby, when she was three.  Caught in a sudden downpour, we boarded an open top tour bus (don’t ask!) to the abbey, and were surprised when, as we were struggling to fold up the pushchair, the voice over the guide’s megaphone sounded just a little bit too familiar… ‘Upsy Daisy!  Upsy Daaaiiisy!!!’  She had the entire bus pretty much rolling in the aisles that day!  Honestly, give the girl a captive audience and there’s no stopping her!

In the same way that we laugh when a toddler removes every last item of clothing and brazenly performs naked tipple-overs on the lawn, there is something inherently joyful in the nature of our children to behave utterly inappropriately. Maybe it reminds us of how we ourselves might be, without all our grown up responsibilities and inhibitions; imagine having the freedom to act on our every whim with pure unadulterated abandon!  I often think that having ASD must be like living life permanently on this wavelength. 

Boo’s antics are often embarrassing, but delightfully funny too.  She makes me laugh and others smile.  It is her gift to us and I am grateful every day for the joy and laughter she brings.  Oh, and when the roofer came recently and Boo greeted him with, ‘Hello, annoying man’, she made his day, too!

Sometimes it's hard

It is impossible to think about our daughter Boo without smiling.  It’s a smile we see reflected in her sisters, her grandparents, her teachers… almost everyone who knows Boo seems a little bit happier for it.  Living with a child who has Autism Spectrum Disorder feels special, and life is never dull.  But occasionally, a little bit of dull would be very welcome.  There are definitely difficult times, and to gloss over these would be doing a disservice to other parents out there with children on the Autism Spectrum, who are dealing with untold stress on a daily basis, and just knuckling down and getting on with it.  The Autism Spectrum covers a very wide range of behaviours and difficulties, and people with the condition can be affected by any number of these to a greater or lesser degree.  By comparison, Boo’s autism could be considered relatively mild, yet can still wreak havoc on everyday life, for her and for us.

 I think the hardest things we’ve had to cope with in our family are lack of sleep and Boo’s prolonged incontinence.  Insomnia is common in people with autism, due to abnormally low levels of melatonin; the hormone which tells the body when it is time to sleep.  Boo has had difficulty sleeping since she was a toddler, when, wide awake and bored in her cot, she would find mischief to get up to.  Toys and blankies were thrown out, clothing and bedding tossed across the room, wallpaper peeled off, nappies (and often their contents) removed, shaken about and examined intricately.  As adorable as Boo was as a toddler, the horror of cleaning up after these episodes makes me glad those days are over.  Thankfully we soon got wise to Boo’s night-time shenanigans and employed gaffer tape on her nappies, covered by vest, onesie, and all zipped up inside a sleepsack.  These measures only worked some of the time, and even if there was no mess, there was no sleep going on either.  Toilet training took over three years, and at times it felt like we’d never get there.  Nowadays, Boo usually uses the bathroom independently and falls asleep with the help of a melatonin capsule at bedtime, but is an early riser.  She sometimes wakes up for the day as early as 3.30am.  She is often happy to read her books, but if she is feeling particularly chipper, then the sound of her joyful dawn chorus can be enjoyed by the entire family.  

Tired parents are never a good thing.  It is a struggle to be patient and jolly when you’ve only had half a good night’s sleep.  Add to the mix a child who doesn’t particularly want to get ready for school, another who wants to but can’t quite do it on her own and then Boo who will only put on each item of clothing after she has fully explained, in infinitesimal detail, the latest goings on in the world of Moshi Monsters.  Everything takes ten times longer than it should.  Autistic people very often have a love of routine and like things to be familiar, predictable and unchanging.  This can result in rigidity of thought about certain routines, which can vary from slight to obsessive-compulsive.  Boo has a few of  her own routines which she is very particular about, such as the order in which she will put on her clothes, especially in the winter when hat, scarf, gloves, coat, then earmuffs have to be put on in that exact order before she will leave the house.  No just chucking them all in the car for Boo.  This tends to be quite a painstaking process, as Boo also has some fine and gross motor difficulties.  And so we wait.  Only for her to take the whole lot off in the car and then go through the same rigmarole again once we arrive at school, usually at the very last minute.  (The alternative to this is frequently a huge meltdown which will make us even later for school.)  Good coffee has become an essential.  As has the occasional school run in PJs under my coat.

Another daily challenge is Boo’s lack of forward-thinking or consideration for other people or property.  When diagnosing ASD, one of the traits that doctors look for is a lack of social imagination; which includes an inability in the individual to predict, understand or empathise with how another person might feel.  Boo lives in the moment, with little regard for the consequences of her actions; she just doesn’t make the connection that she might upset someone, cause a problem or irreversibly damage something.  We learned pretty early on that liquids and substances with a thick, gloopy consistency were just too tempting for Boo to resist, and after several incidents (ahhh, the nappy-cream carpet paintings and the four pint lake of milk on the kitchen floor!), we had to admit defeat and gate off entire rooms for safety and mess-minimising purposes.  Today, feeling frustrated with a game, Boo threw her DS against a chest of drawers.  Recently, my mp3 player suffered a similar fate.  Hardly a day goes by when something isn’t damaged, defaced or destroyed, just because she had the urge to do it, in that moment.  But if it doesn’t upset Boo, then she finds it a challenge to understand why it would upset anyone else. 

Sometimes there is the worry that something more valuable than property will be damaged.  We had to give up walking to school back when Boo was still in Nursery, because she would regularly give me the slip and run into the road.  Often, she will break free of my grip in the supermarket and before I know it she’s gone (usually to be found in the books and toys aisle!)  For a long time, any family outing was a nerve-wracking experience due to the fear that we would, at some point during the day, lose the Boo. Wrist reins were no good – she would either wriggle out of them or scream so much that people would stare and wonder whether to call Social Services.  We kitted her out in a high-visibility vest, a remote-control beeper on her shoe and wrist-bands with our phone numbers on, just in case.  

Most people with ASD have sensory issues to deal with; Boo has extremely sensitive hearing (and yet she is an expert in tuning me out!)  Certain sounds are painful to her, such as sirens, alarms and ‘the noise the TV makes when it’s on standby’.  There are some flavours/tastes which she is simply unable to tolerate, including most medicines, which makes it doubly difficult if she is ever ill.  She hated the taste of toothpaste so much that for years, the only way to brush her teeth was to straddle her, trapping her arms by her sides.  Boo’s first visit to the dentist was extremely traumatic, due to the multiple assaults on her senses and the fear triggered by the unfamiliar.  New situations like this can be frightening for any child, but even more so for a child with sensory processing difficulties.  Even now, some situations are just too much for Boo to bear due to sensory overload and she is prone to bolt, or retreat into her own head, hands over ears, humming or talking quietly to herself.

Living with Boo has taught us not to take anything for granted.  Her autism affects the whole family on some level, so everyday life is rarely straightforward.  I know that there are plenty of other families living with autism who are having a much harder time than we are, so when life feels stressful I try to remember to be thankful.  It could be so much worse.  And thinking about Boo and her sisters - that smile creeps across my face again – it’s easy to be thankful.

This is the same article (pre-edit) which was featured in the Jan/Feb 2013 issue of Families Leeds Magazine.

Grumpy New Year

Here’s January!  Fresh start, new beginning, hopes, dreams possibilities, potential… all laid out like a feast just waiting to be devoured.  Usually this is my bliss – the mystery of future adventure, unknown promise.  But today I’m not feeling it.

 

At Christmas and New Year, I have been known to fall into the age-old trap of wanting everything to be perfect.  Now you would think that with over nine years of child-rearing under my belt (almost seven of those with a child with autism) that I would know better than to expect life to go according to plan, let alone any slightly elaborate plan based on everything slotting neatly into place at exactly the right moment.  But I am only human, and, well, I forgot that planning anything is ridiculous in our family.

So on New Year’s Eve, I had in mind that the kids would have their movie night, eat their popcorn, go to bed and sleep.  Between 9 and 12, Mr BooHoo and I would dine upon whatever delicacy he had prepared, relax on our squishy sofa and watch a silly movie.  He would be charming and wonderful all evening.  At midnight we would wake the girls for the fireworks, after which they would have a mug of warm milk and go straight back to bed.  Their daddy would say something beautiful about the year to come and then we would all fall into a deep, sweet sleep.  However, this did not happen.  (Shakes head and rolls eyes.  Of course it did not happen!)

It was 9.50 by the time the kids were actually settled in their beds.  At 10pm I had to go upstairs to put the smallest one back into bed.  At 10.15, the biggest came down to say the smallest was in her bed again and was being annoying.  (Oh really? Welcome to my world!)  I sent Daddy up to sort it out.  Mistake.  He caved and let them stay in bed together, for a treat, it being New Year’s Eve and all.  The next hour was filled with one of us going up because they were being too noisy, or the eldest coming down to complain about the youngest.  Boo was fast asleep throughout all of this- for the first time in almost two weeks her Melatonin capsule actually seemed to have worked!   (Sings Hallelujah Chorus- but very quietly!)  At 11.20, I stormed up the stairs again, having paused our movie for the umpteenth time, and split up the little blighters, each back to their own beds.  The result was 10 minutes of complaining and back-chat from the eldest, who then had her (brand new from Santa) iPod confiscated.  This was not going well.  At 11.50, the fireworks started.  Eldest shouted to youngest to come and watch the fireworks from her bedroom window.  A sleepy groan was heard from Boo’s room.  That was IT, I had had ENOUGH! 

‘NO FIREWORKS!’ I bellowed. 

‘WAAAAAAAAAAAAAAAAAAAAAAAAA!’ they howled, for the next half hour.  Seriously.  My sense of humour: gone.

Just to make her be quiet, I got in bed with 9 year old Pipsy.  Just to make her be quiet, Daddy let 4 year old Peeka get in bed with him.  Boo slept on, in her Melatonin snooze-cocoon.  And finally we all slept.

  This morning, 6.30, I am forced out of bed by my three happy girls who, apart from the dark circles around the eyes, show no other signs of the chronic lack of sleep over these past couple of weeks.  I can’t say the same for myself.  Frankly, I look like shit.  I feel like shit, too.  I have had YEARS of my kids not sleeping, ergo me not sleeping either.  It has taken its toll.  If I ever found my mojo again, I wouldn't know what it was or what to do with it.  ;-)

 All three of our girls have sleep problems.  We have two who can’t fall asleep and our eldest is regularly awake when we come to bed.  We have the youngest who, since starting school, usually falls asleep ok now, but can’t stay asleep and wakes us repeatedly in the night.  And Boo, whose autism affects her sleep in many ways, the most disruptive now being early waking, so that she gets up for the day sometimes as early as 3.30am. 

Tired parents are grumpy parents, often unproductive parents.  Housework is never top of my list.  Actually it isn’t even on my list.  Nor, sometimes, is being sociable.  We have lost touch with so many friends over the past decade because we were simply too tired to go out, and we don’t feel good asking people to babysit because it is such hard work.  Inviting friends over for dinner is a thing of the past – we spend all our evenings going up and down the stairs dealing with tired children, so what’s the point?  Our kids have never had friends to sleep over (because, frankly, I have enough on dealing with my own children all night long), and they are rarely invited to sleep over at other people’s houses.  I feel bad for them.

My resolution this year is to find out how to get everybody sleeping again.  If anyone out there has any suggestions, I would really like to hear them!

Happy New Year!  I'm off to sneak in a power nap before anyone notices.