Sunday 9 December 2012

Sick Day



As a lovely early Christmas present, our whole family has been given… a nasty virus.  I have been in bed for most of the weekend, Mr BooHoo took to bed midweek and on Wednesday my three small angels were all pitifully flopped on clouds of tissues.  Having all three girls not at school and poorly for the day really highlighted for me the differences between Boo and the rest of us.

I’m sure it’s not a politically correct thing to say, and I don’t mean to offend anyone on the Spectrum, but when she is ill, Boo is so much more Autistic than usual.  She has fully retreated into her own head this week; not one of my questions has been granted with an answer though I know she can hear me.  She will give me the briefest flash of eye contact which speaks volumes: I hear you, I am ignoring you, leave me alone.  She feels happier, maybe even more comforted on her own and I have to respect that.  I am reminded of my cat, who after a trip to the vet would slink off to some cosy, private place and hiss if anyone bothered her.  Contrast this with Boo’s sisters, who want to tell me how awful they feel, want to be cuddled and coddled and have their pillows plumped.  



All have had high temperatures, and so of course out comes the trusty Calpol.  Pipsy and Peeky eagerly turn their faces up for a spoonful of medicine, like little baby birds.  Worryingly they actually love the taste of it, so much so that I have started to buy a cheaper, generic brand which apparently tastes disgusting.  But giving Boo a dose of the pink stuff, whatever the brand, is traumatic for her (and us, to be honest).  Her autism-skewed sense of taste is such that there are certain flavours which are physically intolerable to her, and unfortunately this seems to include every kind of medicine she has ever tried to date.

When Boo was a toddler, we could shoot medicine syringes full of paracetamol syrup into her inner cheek when she was least expecting it.  She got wise fairly quickly, so our next method was to pin her down - though we had to catch her first!  As she grew bigger, it was necessary to actually straddle her, pinning her flailing arms to her sides and holding her head still, while a second person put the medicine into her mouth.  She became expert at pressing her lips so firmly together that we had to hold her nostrils closed, to make her gasp for just long enough.  Quickly we would tip or shoot in the medicine, and just as quickly she would spit it out.  If she swallowed it, she would often vomit moments later.  She would be shaken and upset by the ordeal, and I would feel guilty to have put her through all this just for the sake of a dose of medicine.  In reality, from Boo's point of view, feeling hot, listless and grotty was probably infinitely preferable to enduring this overbearing treatment from her mum and dad.

So we stopped forcing Boo to take medicine, unless it was absolutely necessary.  For a while, the promise of a chocolate coin bought her cooperation, but nowadays that doesn’t really cut it.  Our latest trick is to use the kids’ tablet form of paracetamol (which has a sugary coating) in the same mouthful as a hefty hunk of chocolate, which sometimes works, although it always makes her retch and often results in semi-chewed spittage down her front.  She simply can not stand the taste.  This week we just gave up in the end; put Boo in some thin jammies and gave her plenty of water to drink, crossed our fingers and hoped for the best.  Poor little monkey.  Who would have thought a dose of Calpol could be so difficult?  So when Boo’s sisters take their medicine like good little girls, I never take it for granted.

Another difference between the girls, is their ability to let us know what is wrong.  Pipsy and Peeky don’t think twice about coming to tell me if something hurts, aches, stings or just generally feels funny.  Contrast this with what happened with Boo a couple of nights ago. First we heard wailing in the late hours of the evening, and when Daddy went to see what was wrong, he came back to bed twenty minutes later none the wiser.  So then I tried to find out what was upsetting her.  ‘Does something hurt?’ Wail.  ‘Do you feel sick?’ Wail.  ‘Can you tell Mummy what’s wrong?’  High-pitched screechy wail.  Boo is six and very verbal; intellectually capable of telling us the problem, but all her energy was being used up in feeling awful, so she had nothing left with which to communicate to us whatever the problem was.  After trying to work out what was wrong for about an hour, we had to admit defeat and just give up.  Daddy got in bed beside her for company, and we listened to her scream, howl and wail for about THREE HOURS, still not knowing what was wrong.  It was a blessing that her sisters were poorly and so deeply asleep that she didn’t disturb them, too.  It’s awful to see your child suffering and yet not have a clue how to make it all better, we feel so useless sometimes.

I often hear parents say of their children, ‘Oh I hate it when they’re ill.’  Well I totally relate to that.  But when it comes to Boo, I really really REALLY hate it when she’s ill, because I don’t always know what to do to make her feel better, or whether the things I do will actually make her feel even worse. 

Thursday 22 November 2012

Thanksgiving

Happy Thanksgiving everyone!  Yes I know, I KNOW we don’t do Thanksgiving here in the UK but we darn well SHOULD!  Why?  Just because celebrating gratitude and being thankful for what we have feels so, so good. 


We lived in the suburbs of Chicago for three years which was a character building experience to say the least.  BooHooDaddy was out at work doing his Very Important IT thing, and there I was by myself with nothing much to do except the all-consuming job of growing babies and raising them.  I was busy, lonely and not good at reaching out to other people, particularly when Boo came along and life became more complicated.  We went to Gymboree and little ‘Mommy and Me’ classes, but I didn’t really fit in, and if I’m being honest I didn’t really try to, because I knew we weren’t going to be staying there.  I do wonder now why I didn’t make more of an effort with people, but as it happened, the few friends I did make were absolute diamonds.  Fran, Marie, B-A and Ms Tina (Pipsy’s first daycare teacher) – you will never know how grateful I am that you were in my life in those long, long lonely days!  I loved that you were keep-it-realists; not putting up a huge façade of perfection.  If things didn’t go to plan, you admitted it and laughed about it, just like my best friends in the UK would have done.  You didn’t try to feed me a load of flaky rubbish about how we would do this or that together – you actually meant it, or else you didn’t say it at all.  I knew where I was with you, didn’t have to read between the lines or second guess anything.
Thankyou, thankyou, thankyou, so so much.


Our first Thanksgiving in the US was a bitterly cold day.  BooHooDaddy had two days off work (as is the tradition, so that the celebration really extends to four days), so we began with a walk to Lovelace Park to feed the ducks.  It was so cold that the lake had frozen over and the ducks were nowhere to be seen.  To add to the general discomfort of the biting air, two year old Pips was screaming in her pushchair and I was wearing a belly-bra (or as my darling husband called it, a ‘gut strap’) due to my uncomfortable baby-bump, which, we had found out the day before, contained a rather large baby girl.  
We had been invited to share Thanksgiving with a colleague of my husband’s, Patty, and her family.  I was dreading it (due to my social ineptitude and pregnancy induced sobriety) but actually that day is one of my happiest memories from our entire time in America.  There were candles, peaceful music, cinnamony-clovey-berry smells, Patty’s boys entertaining Pipsy and the rest of us by being a raucous hoot, their extended family sitting around chit-chatting, and much bustle and deliciousness in the kitchen… all in all a very cosy, very ‘Christmassy’ experience.  The actual Thanksgiving meal was a meal like I have never seen, smelt or tasted before, complete with heartfelt Grace being said at the beginning, which was a new one on me.  Pips had her first ever taste of pumpkin pie.  I felt priviledged to be part of such a special gathering; someone else’s special gathering, and yet we were whole-heartedly welcomed and included, as if they had known us forever.  After dinner, I sat sipping a warm, spiced apple cider (non-alcoholic) and listening to Patty’s dad tell the story of how, every year on the Saturday after Thanksgiving they would get up early and drive to Wisconsin to get a Christmas tree from the same Christmas tree farm they had been going to for years and years… Remembering that day, it felt as if a strong but gentle energy enveloped us; scooped our little family up into its arms and gave us a big, long hug.  Thankyou Patty :-)


Now, with nearly five years back home in the UK under our belts, we have found that aside from affectionately remembering the lovely people we met, the thing we miss more than anything else about living in the USA is Thanksgiving Day.  We did try to keep up the tradition for a couple of years once we got back here, since Boo and Peeky were born out there, and, let’s be honest; you can’t really argue with a day off work, a fine meal of roast turkey with all the trimmings and a cosy family cuddle watching Charlie Brown movies!  But, as lovely as it was, it wasn’t really the same.  It doesn’t feel the same if you’re the only ones doing it.  It felt, well- a bit pointless really.  So we stopped having our little English Thanksgiving, left the kids in school and nursery and me and the hubby just went out for a slap-up carvery lunch.  Nice.  But a bit… blah.

But we have kept up the tradition of beginning our Christmas early, the weekend after Thanksgiving.  In fact, the girls have begged and begged me this year to get the decorations out today, on Thanksgiving day itself - much against the grumbles of their daddy, the old Scrooger!  So after his carvery belly has deflated a little, I shall send him down to the garage to get out a little fake tree and some fairy lights which will absolutely make the girls’ day.  This is our own little Thanksgiving Day.  They will be thankful for the pretty little fake tree, while I will be thankful for my sweet memories of kind, funny Americans.  And thankful for my happy kids.  And their daddy will be thankful to have them out of his hair for a couple of hours while we decorate the little tree.  

If you are one of those families who like to get your tree up and start Christmas, then YAY for you, I say!  Follow your own traditions and ignore all the grumps who say it’s too early.  It’s not about commercialism.  It’s about making your own traditions, being excited, twinkly lights, pretty things, and enjoying seeing your kids with huge beaming smiles on their faces.  There is no greater gift to be thankful for.  Happy Thanksgiving!


Friday 9 November 2012

Well, here we are :-)

Or, more likely, here I am.  Possibly all by myself.  I have no idea what I am doing here, or where this is going, but I think it could be fun.  At the very least, it will keep my hands occupied, which can only be a good thing with a 'more for sharing' pack of Malteasers in the fridge.

So, starting a blog was easy peasy and a little bit exciting.  Feeling very pleased with myself, I googled 'The Boo Files' and discovered, dagnammit, that a lovely and very dedicated lady in Ireland had beaten me to it, several years ago, with her gorgeous blog about...what else?...living with her autistic child, who she calls her 'Boo Boy'.

http://hammie-hammiesays.blogspot.co.uk/2012/05/boo-files.html

Strange coincidence.  That will teach me to believe I am in any way original!  So I have tweaked the name of my blog, which is never going to be in the same league (because I would like to have a life and this is just my new hobby), and I am now calling it, as you can see, The BooHooMama Files.

Another strange happening was waiting in my inbox when I checked my email.  I subscribe to 'The Daily Flame', which I find to be a great source of comfort and wisdom, in the occasional absence of best friends, the Dalai Lama, Old Moore's Almanac, Oprah Winfrey, guardian angels, or husbands who give a monkeys.

http://www.owningpink.com/dailyflame.html

It pretty much said: don't get too big for your boots; always remember what really matters and don't let that get lost along the way.

OK then.

So I want to speak up for autistic kids, who are often written off by their neuro-typical peers, struggling with hidden sensory issues, usually misunderstood and regularly gawped at as part of their daily existance. 
But I also want to speak up for their families; their parents who -as if being heartbroken by a diagnosis of ASD wasn't enough- have to navigate their way through life with these baffling, beautiful children and all that that entails.  It is not easy.  And the siblings of Autistic children do not have it easy either.  My two neuro-typical kids are affected every single day by their sister's autism, no matter how hard we try to smooth things over for them.

We can moan about it or we can celebrate our uniqueness.  I intend to do both, as the mood takes me.


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.

Saturday 28 July 2012

Diagnosis



Boo is the second of my three beautiful daughters.  She was a delightful, happy baby, but often screamed for hours on end, as if she was in acute pain.  Her doctor felt that this was due to extreme constipation and gave us prescription laxatives to put in her milk every day, which helped with the pooing but not with the screaming.  However, when she wasn’t screaming, she was an absolute joy, and her big sister adored her.  These were idyllic, happy times.

At routine check-ups, the doctor seemed to want to focus on all the things Boo couldn’t do.  She failed to meet the ‘normal’ milestones for rolling, sitting, crawling, talking.  My feeling was, so what?  She’ll do it in her own good time!  Let her be!  But at 12 months Boo still wasn’t performing for the doctor, or anyone else for that matter, which prompted a referral to Early Intervention Services in our then home town on the North Shore of Chicago.  I put it down to pure American over-the-top nonsense.

But it was too late, I had felt that first edge of fear.  Maybe she’s not ok.  A couple of months later, watching Boo receive physiotherapy to encourage her to move, something in me shifted. Already pregnant again with baby #3, feeling sick and scared, I knew I couldn’t do this on my own.  I needed to be home.  HOME home.  Near my family, my friends, familiar faces and places, and good old British common sense.

Fast-forward 9 months, Boo’s second birthday, and we are back in the UK, now a family of five.  She is now toddling well and talking A LOT, but not to anyone in particular, and she is only using words and phrases that she has directly lifted from DVDs or talking toys.  There is little or no eye-contact and she doesn’t respond to her name when we try to get her attention.  She lines up her toys obsessively, but doesn’t play with them.  The word AUTISM flashes in my brain.  I sweep the thought away, quickly.  My eldest daughter used to line up her toys too, it’s nothing to worry about.  Maybe Boo just can’t hear me when I speak to her.  I take both girls for a hearing test.   Big Sis has a slight hearing problem.  Boo’s hearing is perfect.

We are referred for aComplex Communication Disorder Team Assessment’.  Before this takes place, my husband asks the paediatrician outright: do you think our daughter is autistic?  Yes I do, she answers, and I feel that stab again.  But I do my research, and I find out that the Autistic Spectrum covers a vast range of difficulties and behaviours, many of which I have never seen exhibited in our precious child.  I convince myself that the doctors, the early intervention assessor, the health visitor, the paediatrician…are mistaken.  My Boo is perfect.

We are visited by a specialist health visitor and a speech therapist, who assess Boo at home, and then a few weeks later we take her to a special playroom at the health centre where she is encouraged to participate in a series of games and activities with the speech therapist, an occupational therapist, a clinical psychologist and an educational psychologist, while being observed through a wall of mirrored glass.  These are the last moments that I can kid myself that I have a perfectly normal child, and I hold onto them for dear life. 

At the end of the morning, the specialists who have observed and assessed my sweet little daughter meet privately and then report back to us.  Boo is diagnosed with Autism Spectrum Disorder.  I am not at all surprised; I knew it of course…but I feel my hopes die, my heart turn to stone for a moment.  It’s a sickening feeling.  The next few hours are a blurry haze; I’m on auto-mummy.  I go home, feed the baby, make lunch, put the girlies down for their naps, do the laundry, do the afternoon school run. 

As I arrive at school a little early, I wait in the car for a few minutes, not wanting to face anyone.  I know people will ask me how the morning went, and I’m not ready to say it out loud, not yet.  I’m not ready for the look on their faces when I tell them, not ready for their concern.  So I sit, close my eyes, try to ignore the ringing in my ears and just breathe.  Finding me finally unoccupied and seizing its moment, the grief washes over me like a wave.  All the dreams I had for my little girl and the woman she would become are crashing and tumbling and rolling away with the tide. 

A true story of sadness, heartbreak, shattered dreams…but not the whole story.  Because later that day, as I watch my three girls playing happily together on the rug, I realise that in reality, nothing at all has changed.  Looking at our family through their eyes, all is exactly as it should be.  Toys and crumbs all over the floor, baby Peeka babbling to her sisters, Big Sis drawing pictures, Boo doing a jigsaw puzzle; just like any other day.  Watching Boo smiling contentedly, I see she is exactly the same little girl she’s always been: delightful, odd, cheeky, funny, stubborn, at times baffling, but always my Boo.  She looks up at the TV and beams at her favourite characters on the screen, shouts in delight and begins to dance. She’s still my Boo.  And she’s perfect, just the way she is. 



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