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 a ‘Complex 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.