I’m sitting in the hospital corridor waiting. A hundred thoughts are racing through my anxious mind, all clamouring for my attention. I take a deep breath to settle my nerves, but the stale, clammy, indoor, hospital air does little to settle me down. I glance at my husband, who is sitting next to me, he’s staring at his shoes. Lost in his own thoughts. My gaze moves to the trolley beside us, where our 18 month old daughter, Hazel, lies deeply sedated. Her cheeks are flushed red and a sheen of sweat dampens her pretty blond hair. A grey plastic heart monitor sensor pinches her tiny finger, whilst the monitor itself rests on the foot end of the trolley, emphasising how tiny she is. The nurse accompanying us stands silently, a bored expression on her face; as if she wishes she was anywhere else but here right now. She avoids my gaze as I look at her and I turn away taking another deep breath of fusty air.
I think of the people who ask me questions. The ones who ask of my little girl’s older brother,
‘When did you first realise he was autistic?’
I think back to those first visits to the old hospital, gone now, demolished and rebuilt into affordable homes; the children’s wards moved up the road, to the clinical, impersonal, District Hospital. I think of the questions, the assessments, the meetings. The being told that our little boy was disabled and not understanding what it meant, any of it.
It creeps upon you sometimes, stealthily, unseen, silently stealing a little more of your hope and expectations with each milestone. Sometimes you don’t even notice until afterwards. Like when you walk past the boys playing football on the field, parents hollering and screaming at the sidelines, sleek new cars parked nearby and younger siblings playing in the park; happy families. You slope past, hoping to go unnoticed as you attempt to guide your glaringly different child past the game without incident, and realise with a jolt that the lad that just scored a goal, to the jubilation of his sideline parent, is the same age, went to the same toddler group. The kick in the guts when you realise that will never be your son. Then the forbidden tears come, unexpectedly, and are stifled again. This is not death. No, but it’s the loss of the child you expected to have, it is berevement in its own way, and quietly, without memorial, you bury the phantom child that never was. You dredge up reserves of courage and resourcefulness you never knew you had and learn to celebrate the tiny triumphs and love the unique specialness, whilst the headstone of perfection lies heavy in a corner of your heart.
I know now, that the signs were always there, the difficulties existed from birth. I know now, after the birth of his two younger sisters, what milestones my son never reached, how much help he needs to make progress, how reliant he will always be on others to help with every aspect of day to day life. I know now what the words ‘your child has autism’ mean.
I think of my youngest daughter. How one day the light in her eyes switched off. I think of the winter day, when barely past her first birthday, she woke in the morning with pus oozing, horrifyingly, from her ears. I think of how the antibiotics worked on clearing up the infection, reduced her fever, and how her eyes stayed dead. I think of the niggling concern, when she didn’t respond to my voice, her name. I think of the hearing test to which she didn’t respond, just like her bother years before. I think of how her face now stays expressionless even when I try to play with her. I close my eyes. Silently I pray.
‘Dear God, please let it be her hearing, please let it only be that she needs grommets. Just a simple routine operation that will restore normality. Please. Please.’
A door opens.
‘Mr. and Mrs. Grant?’ A middle aged woman wearing a white coat and clutching a clipboard looks at us enquiringly.
‘Come in. I’m Dr. Coates, I’ll be conducting the hearing test today.’
She shows us where to sit, as the nurse wheels in the trolley.
‘As you know the procedure is called the Auditory Brain Stem Response Test.’ Dr. Coates starts to explain, in a soft calm voice. ‘We will be attaching some electrodes to Hazel’s head and measuring her brains response to the hearing test, to see how well she can hear. If there is no response from a child’s brain that that would show that they cannot hear anything.’
We both nod our understanding.
The audiology room is surreally silent. Even the whirring of the fans of the computer equipment seems hushed. Without being told so, you feel you must be quiet, like you are in some kind of weird library and must speak only if absolutely necessary and even then only in whispers.
As Dr. Coates and her assistant attach wires to Hazel’s head and connect these to their computer equipment, we sit in silence. The nurse hovers, slightly less bored now, but still distanced from us.
The test starts. I can hear small noises coming from the headphones over Hazel’s ears, little buzzes and squeaks. I start to pray again.
‘Please let it be grommets, please let it be grommets.’ I repeat over and over in my head.
Soon, it is over. Dr. Coates looks up.
‘Her hearing is fine, so she doesn’t need grommets. I’ll send the results off to the Child Development Centre; they may well want to see Hazel again…’
Dr. Coates is still talking, my husband is answering her, but I do not hear what they are saying. I’m vaguely aware of standing up, leaving the room, the corridor seeming suddenly noisy after the artificial silence of the audiology room.
The nurse wheels Hazel, on her trolley, back out into the corridor and we start to head back towards the children’s ward, where we will wait for the effects of the sedative to wear off before going home. She turns to me, the most animated she’s been the whole afternoon. She looks relieved.
‘That’s great news, isn’t it, she doesn’t need grommets.’
I look into her smiling face and feel a sense of resignation, my last hope that my instincts were wrong has gone.
‘No.’ I reply. ‘It’s not good news, because if her hearing is fine, then that means my daughter is autistic.’
A year has passed and we are sitting in a circle, with various Child Development Centre health professionals, for a multi agency case meeting about Hazel. This is where we will be officially told that she has autism. The room is filled with laughter as we laugh and joke through the meeting and occasionally the Paediatric Clinical Psychologist, who hasn’t known us for the years that many of the other people in the room have, gives us a quizzical look. Eventually I take pity on him and explain.
‘I’ve had a year to get used to the idea that Hazel is autistic, I knew when she had the brain stem hearing test.’
The Speech and Language therapist chips in. ‘It really shows you have been working with her, she has made fantastic progress.’
I smile. Not at the praise, that’s not my reward. I think of my daughter, the time I spend playing the interaction stimulating games I know so well from years of practice with her brother. I think of her giggles, the light in her eyes when she smiles and the hope that has risen from ashes.