Super Siblings (Part 2)

Pips, my eldest daughter, like many other first-born children, lived her first couple of years as an only child, hearing ‘Yes’.  Yes, we can go to feed the ducks.  Yes, we’ll paint pictures today.  Yes, we can go out for lunch.   Yes, yes, yes.  Whatever she wanted to do, the answer was usually the one she wanted to hear, because truly, there was no reason at all to say no.  It was just the two of us (when Daddy was at work) and a multitude of people to visit and places to go and things to do.  When we moved to the USA, our wings were clipped somewhat, not knowing many people to visit or places to go or things to do, but even so, it was just us two, and in our little bubble, we were everything to each other.  My whole world (inside that bubble) was about keeping my little girl healthy and happy, and so my answer to her many requests was pretty much always a ‘YES’.

Enter little sister Boo.  Suddenly, Pips had to get used to hearing the word ‘no’.  No, we can’t go out right now.  No, we can’t paint.  No, I can’t do a puzzle with you.  No, no, no.

I myself am a first-born child.  I can remember distinctly the day in 1975 that my little brother was born, at home, when I was two and a half years old.  I can remember hearing strange noises from upstairs, and when I went upstairs to investigate, I remember feeling a little lost and put-out that Nanna told me to go back downstairs and watch Playschool.  There is a photo, taken when my brother was just a couple of days old, which shows EXACTLY how I felt about having to share my Mum.

Poor little me, little girl lost.  I remember it clearly.  So I can understand why lots of kids struggle when they suddenly become a big brother or sister.  They are used to being the centre of the universe and then, BOOM, it’s all over.  I get it.  I think I spent most of my childhood feeling like life wasn’t fair.  I was convinced that my brother was the family favourite.  To say that I resented him at times, would be putting it mildly.  Interfering with my games.  Playing with my toys.  Messing up my stuff.  Being all cute and adorable whenever any adults were around, then spawn of Satan when they weren’t.  Ack.  But then, there were times I quite liked him too.

Pips’ early experiences of being usurped from her comfortable role as ‘One and only baby of the family’, were not all that different to mine.  There was some resistance.  There was denial.  There was flat-out refusal to accept it.  But eventually, the pieces of our lives which had all been thrown up into the air when Boo arrived, came floating down and landed in their new places.  All was well for a year or so.  Nothing much out of the ordinary to report.  Life with a baby and a toddler is not a piece of cake for anyone, but we did our best and we were fine.  We even decided to have another baby.  Life was good.  Relaxed, even.

Then it all changed.

Boo’s paediatrician had referred her to Early Intervention Services at 12 months.  Shortly after, she started receiving weekly physiotherapy at home (which involved putting Cheerios up the stairs and making Boo try to crawl up to eat them!)  I believed the intervention was unnecessary and ridiculous – that Boo would do things at her own pace in her own good time, (and she did, but little did I know how much time it would take!)  These sessions were just the beginning in a very long string of professional visitors to our home over the following years, including speech therapists, a specialist health visitor, play therapists, a clinical psychologist, occupational therapists, educational psychologist, officials from the education department, the school nurse… and many others whose roles or official titles I can’t remember.  Looking at it from Pips’ point of view, there always seemed to be someone coming round to see her sister.  Very early on in the process of Boo being assessed for a diagnosis, Pips asked me, ‘Why does nobody ever come to see me?’, and my heart broke a little for her.

 In those early years leading up to and after diagnosis, keeping Boo’s appointments felt like a full-time job.  Thank heavens for Early Intervention -professional help arrived from every angle you can imagine- but OMG it was exhausting!  Seriously.  If I’d had a job at that time, I would never have had the time to go there and do it.  Life as we knew it had gradually been taken over by this new way of life which was all about Boo.  Baby Peeka had been born into it and had never known any other way of life, but guess who was feeling a little pushed out, invisible, unimportant, insignificant, unloved? 

 Of course, I could see how Pips was feeling.  I honestly did my very best to compensate her in the midst of the madness.  I can truthfully say, that in terms of quality, focused one-to-one time, Pips has had more of this over the years than either of her sisters, because she has consistently needed and demanded it, (in a way that her sisters rarely have.)  But now that Pips is 9 years old, I have realised that it really doesn’t matter how much time, energy and attention I think I have given her; her perception (which is absolutely real and true to her) is that she has never had enough of it. 

Having a sister with Autism has affected Pips in many ways, and so as not to be guilty of gross parental overshare, I will just say that there have been struggles and there has been anger.  Pips has suffered several problems that have not been an issue for Peeka, who has never known any other way of life, and at 5 years old, isn’t quite aware of what others see when they look at her sister.  For Pips though, she is very aware, and isn’t quite sure which side of the fence she belongs on, theirs or ours.  At school, Pips is often embarrassed by the odd things that Boo does, when other kids notice.  Sometimes it’s hard not to notice.  Occasionally Pips has been teased at school about her ‘weird’ sister.  She doesn’t know whether to disown Boo or protect her.  She is angry at Boo (for behaving in a way which draws attention) and yet also angry that anyone would be so mean about her sister.

At home, we have grown to enjoy Boo’s ‘oddities’.  They make us laugh, but we don’t laugh at her – the laughter comes from a place of love and pure joy.  Pips laughs too, and will often ask me during our bedtime cuddle, ‘Have my sisters done anything funny today?’  But then at other times, she resents Boo’s quirkiness and is reluctant to see anything positive about her unusual behaviours, which she often calls ‘stupid’. 

‘I wish I was Autistic!’ Pips will cry out, when Boo gets to go to fun events, like a monthly club for local kids with disabilities, and a fabulous SEN playscheme for parts of the school holidays.  These are quality services where Boo can spend time with other kids who are different, like her.  When Boo is out we can do things with Pips and Peeka that we wouldn’t usually be able to do if Boo was with us; things Boo wouldn’t enjoy or cope well with.

Last night, cuddling at bedtime, I mentioned to Pips that I was writing this post about her, and asked what she thought were the best things and the worst things about having a sister with Autism.  There were no best things.  There were lots of worst things:

•   Boo takes what she wants from my room and ruins everything.  It’s not fair!  (It really isn’t.  We’ve even talked about putting a keypad on her bedroom door to keep Boo out.)

•   There is one set of rules for me and another for Boo.  And another for Peeka (True. That’s the way it has to be, because our expectations of each child reflect their age and level of understanding.) 

•   Boo hogs the computer. (True)

•   She makes mess.  (True)

•   She eats noisily.  (True)

•   She talks about Moshi Monsters all the time.  (True)

•   She tells the same jokes over and over again.  (True)

•   She ignores me when I ask her a question.  (98% true)

•   She chews my things.  (True)

•   She is annoying.  (Sometimes true)

After hearing her list of complaints, I gave her a big hug.  I didn’t really know what else to do.  Living with a sister with Autism is not easy.  Pips finds it very, very difficult.  And then she turned to me and said sadly, ‘If she wasn’t Autistic, she’d be my best friend.’

I think that means she loves her to bits.  At least, sometimes.   
I hope that one day, when she's older, Pips will realise that Autism can't stop them being best friends if they want to be.  

Pips' journey with her sister's Autism has been rough so far, and may get worse before it gets better, but just imagine the strength of spirit she will have built up by the time she reaches adulthood.  She will have spent her life overcoming daily frustrations, practising patience and learning acceptance of the differences of others.  She'll make an awesome best friend.  Queue forms here.

 

Super Siblings (Part 1)

Boo has two sisters, one older, one younger.   Peeka is her almost 5-year-old little sister.   Now, it makes sense to me that a child who was born having an older sibling with special needs would be very accepting of the situation, because she has never known any different.  And I think, in the case of Peeka, that would be true.  

Until very recently, our littlest girl didn’t appear to notice that there was anything unusual about her sister.  After all; Boo is Boo: it’s everyday stuff in our house.  I’m still not sure to what extent Peeka has noticed.  I do often hear her shouting at Boo in exasperation,  ‘Are you even listening to me?!’,  getting frustrated when Boo retreats into her head, ignoring the rest of the world.  They play imaginative games together – all on Boo’s terms of course, but Peeka is happy to be led, because she looks up to Boo,  her ‘cool’ big sister.  She has cool toys.  She has big Year 2 friends.  Peeka frequently declares on hair-wash night, that she wants to have hair as long and as straight as Boo’s (which is never going to happen, bless her curly little locks!)  It is sweet to witness her adoration, and yet bittersweet, because one day she’ll be aware that her cool big sister is possibly not all that cool in the eyes of most of the other kids at school.  Which is sad.  I wish those kids knew just how cool she really is. 

 A few months ago, I got this lovely email from the mum of one of Peeka’s little classmates in Reception (names changed):

Bit of a tricky one but I'm just going to come straight to the point!
Sarah was asking questions about Boo today. Why does she speak differently?  She's starting to become a lot more aware of children who might have learning difficulties or a disability and asked a lot of questions when she saw Children in Need things.
I just don't want to say the wrong thing and cause her to maybe say something to Boo. I doubt she would but you never know!
So, is there a way I can explain or do I just say nothing?
I'd really appreciate your thoughts! 

I thought that was so sweet of her.  And I answered as best I could, but you know what?  I don’t really know how to explain Autism to a five year old either.

Oh bless you both xx! I'm no expert but at home we have just said to Peeka & Pips that Boo has Autism which means she has a different kind of brain to them, so she doesn't think the same way or act the same way.
Having Autism means that she sometimes finds easy things hard (like running, jumping, writing, talking, listening) and she sometimes finds hard things easy (like reading, spelling, doing maths in her head and remembering lots of things.)
Boo is super clever but sometimes gets muddled up how to behave (like when to be loud or quiet) and she finds it hard to understand how other people feel, so Mrs Jones helps her when she gets mixed up at school.
Hope that's ok?! I might have a book somewhere I could lend you. So nice of you to ask- it is an awkward one, I am not really sure how to approach it myself to be honest! I sometimes wish they would talk about it at school cos kids aren't daft and know perfectly well there's something odd about the SEN kids!

 (A topic for a future post: why do mainstream schools often pretend that their kids don't notice that some of their classmates have special needs?  It baffles me.)

I didn’t have a plan for introducing the topic of Autism at home.  I’ve been wondering for a while now just exactly when (or whether!) to discuss it with Boo herself.  As it happened, the questions came from my eldest child at the dinner table, which floored me a little since I had ‘nothing prepared!’  Rather than try to sweep it under the carpet, I went for the breezy yet frank approach (see above), which I hoped would work for all three girls.  So now they know.  Significantly, Boo knows.  She knows she has Autism, and has never said another word about it.  When she wants to know more, I’ll be waiting.  But as for Peeka, the information she heard over pasta twists and meatballs that night, is enough for now.

 One of these days, like her little friend Sarah, Peeka will become more aware of the ways in which her big sister is different to other kids, which makes me a little bit sad, but also a little bit excited, because she will then begin to realise how amazing her sister with Autism is, and also, how special she herself is, for loving Boo so beautifully.  Living with a sibling with Autism is not easy.  It is confusing and chaotic.  Much patience is required.  You have to be able to accept that sometimes your turn never comes.  Sometimes there will be no bedtime story because Boo is having a meltdown.  You have to get used to people staring at your family in supermarkets.  Sometimes your mum and dad are mega grumpy because they only had 3 hours sleep.  Sometimes your Disney Princess comic will be drawn in because Boo took it without asking.  Sometimes you will have to get up at 4 in the morning to see why Boo is laughing her head off.  You already know (because your mum says it frequently while brushing Boo’s teeth in the bedroom) that sometimes you have to bring the mountain to Mohammed.   It is not easy to live with an Autistic sibling.  Peeka makes it look easy.  After all, it’s all she’s ever known.

Thankyou to Happy Home Baking for the yummy pasta image!
http://happyhomebaking.blogspot.co.uk/

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.