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.