Drama Queen

 Last Thursday, I woke up early, having hardly slept due to the stifling summer heat, and was grateful that the air had cooled down overnight. I opened the curtains to enjoy the fresh damp of the dewy garden, then went downstairs, made myself a coffee and brought it back to bed, and it was only then that I realised it was Hospital Appointment Day.  I was all at once stopped in my tracks and sickened by that awful kicked-in-the-guts feeling you get, when you remember something you have been dreading.

After that, my whole getting ready routine was refracted through a strange and sad prism of imagined meaning- the shower didn’t immediately work; what did that mean? Was it a sign? More of my hair came out than usual when I washed it; was this a warning? A prediction? I knocked my favourite and sparkliest, rainbowiest dangly crystal down as I passed in front of the windows; why that crystal? What was the Universe trying to tell me?  In my heart, I felt a strong sense that I was living the last few hours and minutes of a sweet ‘before’, to which the ‘after’ would be forever bitter in comparison. It took me a few goes to find appropriate music to mark the occasion. SYML seemed the obvious choice, but instead I went for Radio 1, in case of further messages from God/the heavens. Bloody drama queen! 🤣 

On the way to the hospital, in the passenger seat of Mum’s Fiesta, a seat I only ever seem to sit in when I’m going to the hospital, I felt sick. A few days before, on the way for one of my scans, Mum’s car had begun to squeak again. It used to squeak all the time two years ago when she was driving me to my radiotherapy appointments, 5 days a week for 5 weeks. Even the car knows something’s wrong, I thought.  I began to weep, tears for fears. I felt actually terrified. 

Long story short, it went SO much better than I thought it was going to.  I can’t even describe the relief.  The bubbly consultant and his upbeat specialist nurse put us immediately at ease.  

“Well, the good news is, we can get it out,” he said matter-of-factly in a friendly Australian twang.  

“Ok, good. What’s the bad news?” I asked, feeling like my guts were about to drop out of my arse.

 “There isn’t any bad news,” said the nurse gently, with smiley eyes above her Covid mask.

“Do you want some bad news?” the consultant asked in mock surprise, “ahhhh... well, you’re going to need an operation, so that we can get it out. And some chemo to mop up any bits left over.”  I already knew this, so it didn’t feel like bad news at all.

That was it. Yes, I was given the usual info about risks of surgery, what could go wrong in the worst case scenario, the stuff they have to say.  But after that, a quick examination of my now no longer churning tummy, and I was free to go.  Back in the hospital foyer, I felt like I was walking on air, so much lighter than I’d felt half an hour ago.  I could tell Mum felt it too.

Back home, Peeka loitered while I told the Ex how things had gone, and my eyes locked with her scared dark chocolate ones.

 “It’s all ok, I just have to have another operation and some treatment, it’ll be just like last time, Daddy will stay with you while I’m in hospital.”

“Ok,” she said, taking it all in her stride, before returning to Project Diva, her latest obsession.

I went upstairs to see Boo in her new bedroom.  The night before, at bedtime, she had asked me to give her a hug.  She hates hugs with anyone apart from her Dad, who she idolises. She especially hates Mum-hugs.  But that night she was tearful and upset. I jumped at the chance for a cuddle and asked what was on her mind.  

“I’ve been thinking a lot about death,” she said.  

“Oh, Boo, have you been worrying about my death?”

“No, mine”, she answered with a wobble. “Do you think when we die we get reborn?”

“Nobody really knows what happens, apart from the people who have already died.  Some people believe ... ... ... .  2 minutes of my musings on death and beyond. 

“What do you hope happens when we die, Boo?”

“I hope I live on,” she said simply.

“I hope I do too,” I replied.

“Was it bad news?” she asked.  So often I assume she’s oblivious, not engaged, unconnected.  She is none of these things.  She feels very deeply, she just doesn’t show it very often.  I shared my news and she said, “Ok, can you go now?” A typical Boo response. I have my information, you can leave.

I popped my head around Pips’ door, and told her my news as briefly as I could. Pips isn’t into long conversations with me, unless she has initiated them. I treasure them, when they happen.  This wasn’t one of them.

“Epic,” she replied, and continued putting on her make up.

Everyone is ok, I thought to myself.

On Friday morning, I made myself a coffee and brought it back to bed. Things felt back to normal again. Life as usual. Life, with its ups and downs. I opened the windows and heard the noise from the road outside, and, in between cars, buses and lorries, the birdsong from the trees out the back. 

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.

 

Learning to Accept

In the early days after my daughter Boo was diagnosed with ASD, my emotions were scattered in all directions.  I knew intellectually that nothing real had changed, and that the diagnosis was just a group of words to describe a group of behaviours.  Boo herself hadn’t changed into someone else, and I was still her mum and felt exactly the same way about her as I had before.  We were still us.  But everything else felt different somehow.

With three little girls to look after I was always busy, and thankfully this kept me from dwelling too long on what might have been.  So I just got on with the business of being a mum.  But sometimes, as I was loading up the dishwasher or doing some other trivial everyday task, I’d remember the daydreams that I’d had about my future family and suddenly feel overwhelmingly sad that some of them might never come true.  Then I’d look at Boo grinning away to herself and feel guilty for ever wishing that she could have been different.

Seeing Boo in a hand-me-down dress brought back memories of her older sister at the same age: engaging, chatty, the centre of attention; an expert conversationalist. Such a clever, sociable little girl – we were so proud of her!  But Boo was so different- often closed off, insular; happy in her own little world, but a real enigma.  And we were proud of her too, but somehow it didn’t feel legitimate.  Or, more accurately, I had a niggling notion that other people wouldn’t see it that way.

I found it hard for a while to be around other people’s children, who were doing all the things my Boo was ‘supposed’ to be doing, but wasn’t.  It was difficult to hear other mums chatting about the challenges they were having with their toddlers, because all I could think was, yes but your child is ‘normal’, don’t you see how lucky you are?  I felt angry, hard-done-by, short-changed.  I fumed at home and ate far too much ice-cream. 

I read book after book about Autism, medical journals, magazine articles, scoured the internet for hours every night when the girls were in bed.  I read all the information I could find about what could have caused the Autism.  Vaccines?  Genetics?  Medication I might have taken when pregnant?  Was it something I did?  I examined the research, scrutinised the facts, searching for something or someone to blame.

Inevitably, during my search for answers, I came across several ‘cures’ for Autism.  I am unhappy with the word ‘cure’, because ASD is not a disease.  But the idea that I might be able to do something to take away Boo’s Autism was like fire in my veins; this was now going to be my mission.  I was going to join the ranks of the Mother Warriors, fierce protector of my child and taking no prisoners until she was free from the claws of this evil.  This was my new obsession for a while.  I looked into behaviour modification programmes, special diets, alternative vaccine schedules… it was exhausting!  Some ideas made sense to me and some didn’t.  Armed with information and fortified with advice from our team of health and education  specialists, I took the decision to stop trying to fight Boo’s autism, and start trying to accept it.

Amongst all the books and articles I had amassed about autism, I came across several references to a now infamous essay from the 1980s titled ‘Welcome to Holland’.  The writer, Emily Perl Kingsley, reflected on her experience as a parent to her child with special needs, and likened the experience to planning a holiday to Italy…but instead ending up in Holland- an equally beautiful and fascinating place to visit, but indisputably different from Italy.  The essay resonated with me because I too found myself in the middle of a situation I had not prepared for - one totally different from the experience I had expected - but beautiful and special all the same.

Boo is six now, and absolutely gorgeous.  She loves reading, playing on the computer, flags, pirate hats and ‘Five Counties’ cheese.  Her ambition (this week) is to be a Paralympic long jump gold medallist.  She has the most infectious belly-laugh in the world.  Our relationship is pretty much all on her terms.  If I am interesting or funny enough (or providing snacks!) she’ll give me the time of day, but she makes no bones about the fact that she’d rather be snuggled on the sofa with her dad, watching sport.  She’s not a great one for conversation; Boo is more of a commentator.  If I ask her a question, she either a) ignores me, b) tells me to ‘shshsh, be quiet’ or c) gives me a very long and detailed answer…to a completely different question.  Her cuddles are heavenly. 

As a parent, trying to figure out the best way to bring up a child with ASD can be a real tug of war.  We spend a lot of time trying to teach Boo the right (that is, socially acceptable) way to behave.  And each time she makes progress and learns not to behave in an ‘autistic’ way, she becomes a little more socially acceptable and a little less Boo.  And in a way that makes me feel guilty for trying to change her, because people with autism are not wrong, not broken; just… different. 

So why then, are we trying to ‘fix’ her?  I suppose the answer is, for her own good.  We can’t always be there for her and she needs to be able to survive in the real world.  And yes, a very pretty and precocious (not to mention LOUD) six year old child - who thinks nothing of addressing a roomful of strangers as if she were Master of Ceremonies - is very cute and endearing now, but if she does the same thing in high school, or as an adult, say, on public transport, people will have a totally different reaction.  She has to gradually move from her own little world, into ours.  Come to think of it, isn’t this true for all of our children, autistic or not?

So while Boo is still young, I’m going to enjoy all her quirks, before they are all ironed out of her.  If she wants to wear a pirate hat to dinner, I have no problem with it.  When she wants me to wash ‘Gwen’ (a cow she met at the farm, who shares her birthday and lives in both of her ears), that’s fine.  If her list for Santa includes, as it did one year, a squeaky turnip, then I will dutifully jot it down.  We all laugh at the ‘bonkers-ness’ of it all, Boo included, and it lights up our family.  I’d be willing to bet that everyone’s kids are, at times, socially unacceptable and nutty as fruit-cakes.  Let’s enjoy it and celebrate it while it lasts!

This is the same article (pre-edit) which was featured in the November/December 2012 issue of Families Leeds Magazine.