Monday 1 October 2012

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.