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.